MCAS and IGG Treatment-The Journey Begins Again.

Misfit Toy

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We cross-posted at the exact same time. So you are done with IGG and back home now? My infusion is 7-8 hours each day (and I would never be able to drive home afterward). You will have a delayed reaction to it (at least I do with high dose IVIG) and this is to be expected.

Hi Ginger, I do not do IVIG. I am on sub-q. It only took 20 minutes. It was one gram.
 

Gingergrrl

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Hi Ginger, I do not do IVIG. I am on sub-q. It only took 20 minutes. It was one gram.

If you do well with it, can you do future doses at home with a home health nurse or is Dr. Maitland concerned about allergic reaction so you need to be at an infusion center for safety? Maybe if you do it several times with no reaction, you can do future doses at home since it's only 20 minutes? I have never done Sub-Q and am just thinking out loud.
 

Misfit Toy

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Maybe if you do it several times with no reaction, you can do future doses at home since it's only 20 minutes?

I am having a reaction. That's the problem. I am reacting. I can do it at home, but I don't know why I am so sick. it was just one gram and I can barely get out of bed. I feel drugged from it. Plus, diarrhea and nausea and chills.

The CVID board is baffled by my reaction. Everyone does fine on this crap. They don't have MCAS.
 

Gingergrrl

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I am having a reaction. That's the problem. I am reacting. I can do it at home, but I don't know why I am so sick. it was just one gram and I can barely get out of bed.

You said you felt sick prior to going to IGG so I wonder if part of this is due to you already not feeling well (part of it, not all of it of course)!

Plus, diarrhea and nausea and chills.

I have never had diarrhea from IVIG but nausea and chills are common. It often triggers an immune reaction for me but the #1 side effect, for me, is a severe headache and neck stiffness.

Everyone does fine on this crap. They don't have MCAS.

I belong to two groups on FB (for IVIG) and most people actually do have reactions (to IVIG, I don't know about Sub-Q). Some have MCAS and some do not. Most take pre-meds and slow down the infusion speed to help the reactions, but it also depends on that particular batch. I've had some batches with almost no reaction and others where I had excruciating headache, fever/chills and full immune reaction, full body muscle pain, nausea, etc. I often lose 3-4 days to recover (plus the infusion day) but for me the cumulative gain has been worth any amount of temporary suffering (but I know that is NOT the case for everyone).
 

Misfit Toy

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I told the nurse I felt woozy, dizzy and tired within minutes of it going into my belly. She said, "How is that possible? It's just going into your skin where your body absorbs it?" Well, for me, it happened. I mean, I could barely think.

I emailed Maitland, called her office. I could not think after the sub-q. I feel like I have the flu now. That is how I feel. My ears are ringing.

I took Benadryl and Zantac and Tylenol.

I have a headache.

I didn't go into this well. Yes...you said it. I was sick all last night. I have my period and I am so sick from that and had a migraine and knee pain last night. I have had my period for 5 days now at full speed.

The worst part of this is feeling alone. I am alone. when I got into my car, I couldn't find my ticket to get out of her garage in Philly. (the docs) and then I couldn't find my phone. I felt absolutely so sick and scared. Out of control and told them, I can't come here again for this. I am too SICK.

All I could think is I need help. I need a husband, a friend, a personal assistant for so many aspects of my life.

I am honestly somewhat in shock that I would have a reaction to 1 gram of IGG. That is what blows my mind.

It is making me feel like I am fucking crazy. Between this and feeling like I'm on a sleeping pill when I take prednisone. Who feels that way from prednisone? NO ONE.
 

Misfit Toy

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Maitland talked to me. Everything is now worse. She wants me to be evaluated (adrenals) because she said with my adrenals being so weak, IGG does not work. I see an endocrinologist who specializes in adrenals on Monday.

The problem is, I can't take HC, I took prednisone and see above about that. I am on medrol and feel agitated on it. What can one take for adrenals? Supplements make me sick.

I put all of my energy into my health and get nowhere, I am on a revolving track of...."you must fix this and then we will deal with that." Nothing ever gets fixed. Ever.

I need to buy a fucking duplex. I need to get on with my life. I can't. I don't want to pay almost $1200 in rent anymore. I am stuck in a fucked up situation due to health. many of us are.

My adrenals and thyroid need to be working properly she said. Seriously? The whole reason I went to her was because I have no thyroid and I can't take T4. Nothing is working properly.

I feel medication affects in seconds. Minutes. People say they feel nothing, I feel every medication in minutes.

I want to throw my computer at a wall. My therapist is going away for ten days. Maya is going away for 5. Both leaving tomorrow. There is no one.

She is calling in a nebulizer as my throat is closing.
 

Misfit Toy

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I slept last night which I am so happy for but I am utterly exhausted. I feel like I am have been shot. Today will be a bed day.

Disappointment is running throughout my veins. I am aching. My dysautonomia which I am being told I don't have is awful. I can't stand long.

Just 6 years ago, I was flying high. I was a totally different person. Busy with events. I was busy making jewelry. I was getting ready to go to Atlanta and visit and a friend and then drive to Nashville.

We did it all. Drove from Atlanta to Nashville. 6 hours. Drove back two days later. Had so much fun. I walked everywhere. I swam in her pool.

The start of 2013...I had a cold or virus or something I could not shake and then reactions to food. it all just came on like gangbusters. I was going to go to Punta Cana but kept canceling the trip. Finally I went and I had to come home on an emergency flight. I knew when I got home that my life would never be the same. I was in horrific pain and having reactions to foods. I felt totally different. I started looking for answers. By fall I was diagnosed with CVID. That was it.

It's just hard knowing that I will never be able to take the treatment that actually helped me. Maitland said with adrenal issues, you can not do IGG, but look at how many people do. Learner and Ginger have adrenal issues so this makes no sense.
 

Gingergrrl

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I didn't go into this well. Yes...you said it. I was sick all last night. I have my period and I am so sick from that and had a migraine and knee pain last night. I have had my period for 5 days now at full speed.

I think it is possible that you were already so sick going into the IGG that you were more reactive than usual. I would give it another chance in the future (if Dr. Maitland feels that it is safe of course).

All I could think is I need help. I need a husband, a friend, a personal assistant for so many aspects of my life.

You can have my (future ex) husband. Actually you don't want him (and you know I am just kidding :hug:).

I am honestly somewhat in shock that I would have a reaction to 1 gram of IGG. That is what blows my mind.

I had severe akathisia from 1/64th of a Valcyte (in 2014) and there are people who tolerate taking 2-4 pills of it at a time which boggles my mind. We are all different.

Maitland talked to me. Everything is now worse. She wants me to be evaluated (adrenals) because she said with my adrenals being so weak, IGG does not work. I see an endocrinologist who specializes in adrenals on Monday.

I am actually glad that you will see an Endo re: your adrenals and think this is a good thing. I am hoping that s/he can help you.

I want to throw my computer at a wall. My therapist is going away for ten days. Maya is going away for 5. Both leaving tomorrow. There is no one.

We are all still here and you can e-mail me any time.

She is calling in a nebulizer as my throat is closing.

Did she think that you had anaphylaxis from the IGG? If so, I retract what I said about trying it again and you might need a different brand. Did she want you to nebulize epinephrine w/saline or something else?

My dysautonomia which I am being told I don't have is awful. I can't stand long.

I think the TTT will be very informative and you may have dysautonomia even if it is not POTS.

Maitland said with adrenal issues, you can not do IGG, but look at how many people do. Learner and Ginger have adrenal issues so this makes no sense.

We are all so different, like you used to call us each "unique snowflakes". Learner has done great with Mestinon vs. an 1/8th of a Mestinon gave me respiratory depression in 2014. Actually I could barely tolerate anything that I tried in 2014 and 2015 (no matter how benign) and had some reactions that my doctor had never seen in his entire career! I really do not know how I tolerate high dose IVIG and Rituximab and no one is more shocked than I am.
 

Misfit Toy

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I think it is possible that you were already so sick going into the IGG that you were more reactive than usual. I would give it another chance in the future (if Dr. Maitland feels that it is safe of course).

Thank you for this great response..your above email. She just emailed me that I could try a slower tubing in future. That would slow down how quickly it gets into me. I have no idea if it would make a difference. I do know I was not doing well at all when I went in. You are right about that. I had very little sleep and felt crazed. The latex they put on me for keeping the sub-q needles in was causing me to itch.

I had severe akathisia from 1/64th of a Valcyte (in 2014) and there are people who tolerate taking 2-4 pills of it at a time which boggles my mind. We are all different.

I remember this. I could not take it at all. Not even the amount of a pin. My hands and feet would go into total spasm on it. It was a big NO.

Did she think that you had anaphylaxis from the IGG? If so, I retract what I said about trying it again and you might need a different brand. Did she want you to nebulize epinephrine w/saline or something else?

I was definitely having breathing problems from the IGG. There is no doubt. They never called in a nebulizer, or albuterol and my throat did not close up. I just kept taking Benadryl and Zantac and then listening to calming music.

Today, after decent sleep I was still so tired. Flu like, headache a little. The biggest symptom I had was feeling like bugs were crawling under my skin. Awful. I then took Ativan and Zantac and went to bed and I feel better. I managed to make some jewelry and got some things done in spite of it. So, that is good!

Part of me wants to do it again next week if I am in a better place. I wrote her that. If I feel like death for one day..it sucks, but at least just to see if there is any difference.

Actually I could barely tolerate anything that I tried in 2014 and 2015 (no matter how benign) and had some reactions that my doctor had never seen in his entire career! I really do not know how I tolerate high dose IVIG and Rituximab and no one is more shocked than I am.

In so many ways we sound so much alike. I can barely tolerate anything. I keep thinking I should just do chemo. Maybe that will kill my immune system and I will be better? But...I have low iGA, low IGG...low lymphocytes so I guess that is not a good idea. My rheumatologist says, NO WAY. With your numbers, you would die. But...maybe it would calm everything down while I am dying! LOL. :smug:

Anyway, I hope you are doing well, Ginger and that you back is better. Will PM you soon! :heart::star:
 

Learner1

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Sorry, I had to make it through the last 2 days myself, so I'm just catching up now. I woke up really early because I slept a lot the last 2 days.

I do react to IVIG. Both my doctors think its fighting with my autoimmunity. I was in the ER early on with aseptic meningitis before I figured out how to manage the symptoms better. I've done about 10? cycles, and the last 3 have gone better.

My ME/CFS doctor set me up with a protocol with meds, drip speeds, etc. which greatly helps the day of.

The 2 days before, I drink 1.5 times my normal amount of water each day, I take zantac and compounded fexofenadine and ketotifen.

After those meds, I get 120mg Solumedrol to start off, then take naproxen (its the only NSAID I dont have to have compounded), and then 50mg injectable benadryl (I'm allergic to all oral versions). I eat breakfast right before, so there's something in my stomach.

That knocks me out for a couple of hours while the nurse starts the IVIG at my house. I wake up get hungry and eat a light lunch, then get 25mg more benadryl and have another nap. Then, I'm awake for the rest of the day. I get another 25mg before the nurse leaves around 730pm.

Around 3pm the headache and neck pain start and mybintestines are unhappy. I use Quicksilver Colorado Hemp Oil, Thorne Meriva, and Thorne Boswellia to reduce the headache and inflammation, about every 4-5 hours. And naproxen if I absolutely have to as its hard on mitochondria, no more than 1.5g in a day.

Around 11, I inject 50mg Benadryl (after getting in bed) which knocks me out. I wake around 7am and feel fine for 3 hours, I start taking compounded dexamethasone, which I'll do daily for 4 days, 12-16g in 4mg doses spread through the first day, then 12, then 8, then 4, before returning to my usual compounded hydrocortisone.

I get in the car and drive just in time to get to my naturopathic doctor's office, where I fall completely apart. Like clockwork
Yesterday, I was vomiting, had diarrhea, a slight fever, and couldn't tolerate sitting in a recliner chair and had to lie down. I took some compounded ondansetrin for nausea and more hemp oil and Boswellia throughout the day. They gave me 50mg benadryl and then I had a nutrient IV with glutathione and curcumin. The horrible symptoms lasted 3 hours and I was in tears from the pain, the nausea, and intestinal upset. Fortunately, the nurse knows me well and they took good care of me. I felt much better after the IV.

Then I had. 25mg more benadryl and a double espresso from the cafe next door before driving home (somehow, 25mg doesn't knock me out, but 50mg does.) The rest of the day I relaxed, ate a light dinner and went to bed around 10 to wake up at 4am.

I have a slight headache now. My intestines will have shifted to being constipated for the next 5 days. I'll taper of the dexamethasone and use hemp oil, boswell, and Meriva (curcumin) to manage my symptoms. For my intestines, I'm taking a Xymogen ptobiotic with Klaure Labs Galactoimmune and Thorne FiberMend.

By day 7, my intestines, the lagging symptom will normalize. By day 4, the headache and stiff neck feeling will be gone. Days 4-5, I usually have a step is crash as I'm getting of the dex and back onto HC. And then I feel great for 2 weeks and live life fairly normally, increasing my activity.

Do I re commend this for everyone, or even for you? No.

My point in relating all of this is that having a strategy to manage symptoms is really important. I found a protocol that works for me. I had an immunologist, my ME/CFS specialist, and my naturopath all give me help and advice to get me through it. But I now know what to expect each day and how to manage myself to stay out of the ER.

The benefit is that, even though its been a roller coaster, I've been gradually improving, and am much better than last August. Its allowing me to work other issues since I'm not so sick, like working on my mitochondria and metabolic traps I seem to be in.

I don't really like taking all of these drugs. I'd rather find natural things to get the job done. But IVIG is s major shock to my system that I need. I've had to delay twice and both times, I felt rundown and sick until I got it again, so I know its helping.

I believe my MCAS has been a huge factor in my reactions to it. What I described above is about a third the intensity of the first 3 cycles. The last 4 have been manageable and tolerable (with the horrible 3 hour exception) as long as I stay on my program. I put all my meds in an open plastic box that goes with me everywhere for the first 4 days.

All of the oral meds, except naproxen, are compounded. I react to the inert ingredients in all of them, especially antihistamines and steroids, which all seem to have milk or corn products or both. Getting access to these meds was a challenge. I had to go through a lengthy appeal process with my PBM 3 years ago, but once they understood my allergies and MCAS, they grudgingly acknowledged that I am a patient who needs compounds. They assigned a nurse who inyerviewed me about my health conditions and approved all my prescriptions for medical necessity before they go into the reimbursement process.

I keep her updated with my changing diagnosed and overall treatment plan and I get T4, hydrocortisone, estril sand testosterone compounded, in addition to the meds above. Having my endocrine system supported through all of this is essential. I have Hashimotos, adrenal insufficiency, and has my ovaries removed, so I can't function without hormone support.

Anyway, keep at this. Keep working with Maitland and your other doctors. Being so sensitive to everything is hard. Get the supports you need - work on accessing compounded meds to help you through this.

I'd wonder if the SCIG is just a path to ramp up to a higher dose of IVIG. I couldn't imagine going through symptoms more frequently and my ME/CFS doc said to get after my autoimmunity, I really needed to be on a higher autoimmune dose which was too much to do as SCIG.

I am aware that I could go into anaphylaxis at any time. I gave had 2 reactions in front of the nurses, so they believe me, and understand what to do to save me. So far, the injectable benadryl has been enough, but I have 2 EpiPens on hand, too, and I live 5 minutes from the hospital. If I were more reactive, is probably want to be in an infusion center, but I'm tired of that drill and enjoy being able to sleep in my own bed if I need to, or sit on my patio with thefloerres out and the birds singing as I did yesterday.

I know this is tough, but you can do this. There has to be a way. You don't have to do it how I do it, but hopefully, I've given you some clues to funding a path that will work for you. We are here for you if you need us.:hug:

Now...I'm going off to find that dexamethasone.. . wish me luck! ;)
 

TenuousGrip

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Do I re commend this for everyone, or even for you? No.

Holy cow, Learner !

I've watched your posts for a long time and have been endlessly impressed with how far you've taken yourself and how much of a village you've put together to get you better.

But all I could think of as I read that last post is ... if I only did what you just described ... I'd bet a hundred dollars I'd be dead.

How different we really all are ...

May your regimen always work for you, and may you need less and less intervention in the future :)
 

Learner1

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Holy cow, Learner !

I've watched your posts for a long time and have been endlessly impressed with how far you've taken yourself and how much of a village you've put together to get you better.
Thank you. I wish it didn't take this much effort, but I am pretty determined to get through this before my money and health insurance run out. I'm not getting younger and I am determined to get as well as I can. I'm a long way from sleeping 16 hours a day, crashing everywhere, and having significant cognitive dysfunction.

The IVIG has helped me beat back the 7 infections I had and has eased my POTS symptoms by 65%. I'm hoping it can do something about the MCAS one of these days...
But all I could think of as I read that last post is ... if I only did what you just described ... I'd bet a hundred dollars I'd be dead.
I certainly don't want to discourage people and make them think its too hard to do. Rather the opposite.

This is doable if you understand the dynamics of what's going on and what each tool does to attack the problems encountered. Like I said, I interviewed my ME/CFS specialist, a local immunologist, and my naturopathic doctor to understand what each thing does, when to take them, and combine them.

It was pretty scary going to the ER at 230 in the morning with a screaming headache and unable to move my neck... They were very nice and have me an IV of benadryl, dexamethasone, and toradol, which took 6 hours, and I learned I could get similar help at home if I stayed ahead of the symptoms and didn't let them get out of control.

Fortunately, the symptoms come like clockwork, so I wrote down what I did and flow it religiously. I know when I will be nonfunctional, what I'll need to eat, what time to take the interventions, and its become easier with repetition.

The results I've gotten are worth the drama....
How different we really all are ...

May your regimen always work for you, and may you need less and less intervention in the future :)
Thanks. I hope so! And I hope you find what you need, too!
 

Misfit Toy

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But all I could think of as I read that last post is ... if I only did what you just described ... I'd bet a hundred dollars I'd be dead.

I would be dead, too. I can't take that much medicine. I honestly read it and think, MCAS? I have MCAS where even with compounded meds, I can't take them. Plus, my insurance doesn't pay for them. All compounded meds, I have been allergic to. I am on Prescription D and they will NOT cover them....at all.

I'd wonder if the SCIG is just a path to ramp up to a higher dose of IVIG. I couldn't imagine going through symptoms more frequently and my ME/CFS doc said to get after my autoimmunity, I really needed to be on a higher autoimmune dose which was too much to do as SCIG.

I can tell you this, Learner, I could not go through this every week. There is no way. I feel awful. One of the things that has come on for me is this feeling of impending doom. It started hours after the IGG. I felt doom and like my adrenals were having a flight or fight mode.

I remember when I was on IVIG, that feeling would last for the whole month. This awful feeling of doom and anxiety, along with rash, itching, you name it. My blood pressure was so high on IVIG of Gammaguard.

I am questioning whether for me if SCIG is actually worse in the sense that I feel it right away. Like right away. The same way I did with hizentra. Both times I have now done sub-q it is has been like a bomb went off in my body.

With the IV-i didn't have that right away. I would be sitting there with the IV and with Benadryl and be able to nod off and I didn't feel like I had this bomb go off. It happened later. But, not as badly as this.

The sub-q is just instant and dramatic and I literally feel like I want to die or end my life.

Having said that, IVIG made me feel that way, too. And all month long.

I am at a loss. I am so tired of this. All of it. I just want out. Out of my body, my mind...when is this not going to be a full time job? It's full time and I have no energy, no fun.

A latte? Gosh I miss them. I can't even touch a latte.

@andyguitar -I agree with you. The problem is...I never feel good ever, so there is no right time to do it. I am so sick.
 

Misfit Toy

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Hi everyone, I wanted to give an update. I went to an endocrinologist today at U of Penn who specializes in the adrenals. I have been on steroids since January for my adrenals due to exhaustion but also an epidural that seemed to really blow me out of the water and put me into total collapse after it wore off. So, steroids were then given by mouth. Prednisone made me exhausted. Methyl prednisilone made me feel great in the beginning and then agitated, crazy and talking to myself.

This doctor asked me several questions but especially about the duration of steroids in general. I told her that I abruptly went off of medrol (prednisolone) because as the weeks have gone on, I have become somewhat crazy. The energy I had was mental energy where my brain was just flying. I have been on and off of steroids for years due to CVID and Sjogrens.

I switched from medrol back to prednisone because at least on prednisone I was not (totally insane.) :). But, I am feeling awful in that I shake and my stomach will go nuts, etc. I am feeling restless and like I can't sleep. She told me that tomorrow, I need to go back up on prednisone to 2 mg.

Tomorrow she wants me to do an ACTH, Cortisol test and Renin in early AM. Funny enough, she has it that she wants me to have TSH done. SIGH...I am on T3 only. There is no need. Endos seriously know nothing about T3 and TSH. @Learner1 -I think you may agree.

I also heard from the infusion center about coming for IGG this Wed. I had to tell them no. They told me I had to be in touch with doctor here. Not Dr. Maitland.

I wrote my immunologist today who prescribed the IGG. I told her I can't do it. I also said, that I reached out to Maitland who felt that the flow rate was too fast. (I always worry about telling her anything Maitland says due to her feeling like why didn't you contact me and an ego). That and the tubing needed to be different and that I was on medrol, which was making me crazy, plus I had no sleep the night before and a severely heavy period so I went in on only one cylinder instead of four (too graphic-sorry).

Her response was, "I think perhaps we should try it again due to the fact that you had some other issues going on as well that could have compounded your response. And, we could do what Maitland said and run it slower with different tubing. It may be worth a try."

Here is my thought; it sounds nice, right? I am just super nervous and I would not try it now. I have to see what is up with my cortisol. I also would never do it again if I had my period. No way. I told her that I never even had that response with IVIG. Ever. I did have my throat close up, but I wasn't like dizzy and lightheaded like that.

The biggest issue is the feeling of doom I had. I can't have a medication and want to kill myself. I do not mind flu like symptoms. I can handle diarrhea. I can't handle feeling a reaction of anxiety and impending doom. I also do not have a lot of money for other treatments to help it along.

The feeling of doom I had was too much for me to take. I am not sure if it was the combo of medrol and IGG...or the medrol. I became crazed real quick on IGG and felt like I was going to lose it. It was a combo platter.

So, I will think about it. My fear is, say I go into it where I am not too sick and then boom, I become really derailed. I felt crazy, but I also think the Medrol was seriously not helping it because now that I am off of it, I feel so different. Nowhere near as angry, livid, psycho, any of it. It's not fun being by yourself and feeling crazy. I was looking up guns and thinking of getting to my lawyer and drawing up a will.
 

Learner1

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The idea of simplifying everything and trying again with less complexity sounds good. Getting your adrenals managed better as a foundation for all of this certainly seems wise.

The steroids throw me for a loop and I'm trying to manage them better myself. I believe everything about all of your symptoms. They absolutely can make you crazy, so the thing is to realize that, know its not permanent, and act carefully to get things under control.

I usually take 20mg a day of hydrocortisone, in 2 doses. The day of IVIG, they start me with 120mg Medrol, then, I'm on 12, 12, and 8mg dexamethasone the days after, before going back to my normal regimen. Yesterday was the first day of normal and I was a zombie. Today is a bit better and by tomorrow I'll be fine, but this is too steep a cliff to go over.

It seems that the game is to have the support when we need it, then ramp down more easily. I'm trying to figure this out for me now, so I don't have all the answers but am considering the variables ..

I found this page with the conversion chart, discussion of the half-life:

http://clincalc.com/corticosteroids/

Sounds like your doctors are willing to help. They need to come up with a plan that keeps you functioning through this.

...and I agree about the TSH:rofl:

Best wishes...
 

Misfit Toy

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Wow, Learner, that is something else. That is so much steroid. Good for you to be able to take it.

I think the medrol made it all worse. Although, I never know. My body is like a ping pong ball.

I know about the plan of functioning. I would even settle for flu like symptoms, in bed symptoms as long as I wasn't wanting to call a crisis hot line! I am again not sure if that was the medrol or an overall reaction to the IGG. I know in 2014, I felt crazy on Hizentra. Like crazy. My BP was so high and my heart..oh gosh. It was a reaction to the IGG, but was it worsened by medrol.

I may give it a whirl. Not sure.

Yes, the TSH...somehow maybe they will come up to speed one day.

I hope one day you will do this and not have this many symptoms. Like not as awful. I know it's worth it, but wouldn't it be nice to just be tired a day and then get on with it?! Yup.
 

Learner1

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I suspect the Medrol did make it worse. Its strong stuff. There's a purpose to taking it, or I certainly wouldn't, but the regimen I'm on keeps me out of the ER. I hope to not need as many drugs, too.

Hope you get this sorted out so you can make progress.
 
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