Rituxan Update

[Rebecca2z]

Thats right! In 1 month.. I`ll keep you posted

So excited for you @Marky90 and can't wait to hear how it goes for you. The hardest part is the wait, for me it took 2 months to kick in, starts out subtle and then each day gets better and better.

Below are some my personal notes I took while having the RTX and the day after. These might help others getting RTX. I am sure it is different for everyone though.
The RTX I got 8 months later, did not cause any of the symptoms I noted below. I had two rounds, one in Dec 2015 and Jan 16.

Best of Luck !!!



During treatment: Slight tightness around throat, burning gums and rash on chest.
That evening: I had significant pain in thigh muscles, they felt tight, achy, slight burn feeling in muscle.
My TMJ's were painful through the night and woke me up twice.
The next morning: face is very red and hot feeling. TMJ and thigh pain is mostly gone.

 

[Rebecca2z]

Rebecca, my heart flutters when I see you've posted. My dearest daughter is very ill with Me/cfs. Things arę not going well, despite all sorts of attempts. Hearing your story gives me great hope. Thanks

@perrier that makes me feel so good to know you have a little more hope from reading my posts. I feel just awful your daughter struggles with ME, the horror of what you must feel from watching her go through this breaks my heart.

I feel positive she will benefit from some of the research that is currently going on, so you hang in there. Your daughter has your support which is such a gift, it is just awful that so many have no support from family or doctors.

I never ever thought I was going to get out bed again - I truly had lost all hope so I know if I can find something others will too.
Give your daughter a big hug for me !!

 

[Rebecca2z]

Rebecca, I am so happy you will get to visit your parents and am so sorry I missed you at Stanford. I plan to respond to PM's tomorrow but am hoping I will get to meet you at a future trip. Am glad the feeding tube infection is fixed and from catching up on this thread it sounds like you don't need it any more which is more great news! You deserve all these great things coming your way and more!

@Gingergrrl, yes I am sorry we missed each other at Stanford but maybe the next time we can meet up. You send a PM when you have recovered from your trip, I know how taxing those trips are. My hope is you can get some help from your new Stanford team !
XXOO

 

[kangaSue]

@Rebecca2z, I'm definitely of a much lesser degree of severity as far as autonomic stuff goes. It would be nice to have consistent medical terminology across the world and fuller explanation, my report says I have Restricted Autonomic Neuropathy with impairment of cardiovagal and sudomotor function, the doctor is saying orthostatic hypotension for the cardiac side which gets called autonomic failure with a drop of bp on standing but does that apply to me too if mine only drops about 4 minutes after standing but without dizziness or fainting? Hopefully I'll get more answers from the Neurologist appointment next week.

Vasopressors like Northera are not an option for me as they constrict all peripheral arteries. One of my G.I. dysfunctions is Non-occlusive Mesenteric Ischemia which is managed with cardiac nitrate vasodilators which surprisingly improves my bp in the process.

Gastroparesis prevents my stomach from relaxing properly but nitrates alleviate that somewhat so I do get some benefit from the motility agent domperidone. I had a similar experience as you with erythromycin, a bit of improvement for 3 months but in the end it also caused tremors and a spaced out feeling.

If I tolerate something new now, the effect usually only lasts for 10-15 days before it all ends in severe abdominal pain which doesn't leave too many options either with drugs or nutrition, especially as I don't tolerate enteral feeding anymore or TPN.

 

[Gingergrrl]

@Gingergrrl, yes I am sorry we missed each other at Stanford but maybe the next time we can meet up. You send a PM when you have recovered from your trip, I know how taxing those trips are. My hope is you can get some help from your new Stanford team !
XXOO

Thank you Rebecca and I definitely plan to respond via PM as soon as I am able to and the trip was very taxing like you said. You have been a big help to me and very generous sharing your story and I really appreciate it.

 

[CFS_for_19_years]

Rebecca, I'm glad to hear of all your success with Rituxan. I'm really surprised to hear it helps with erythromelalgia.

I also have erythromelalgia in both feet. I can't wear shoes or socks without being in a lot of pain. I used to take venlafaxine XR (Effexor XR) for it until I became intolerant of venlafaxine. Venlafaxine worked better than anything else I tried including Neurontin, Lyrica and a variety of antidepressants. If you can handle it, the extended-release form (XR) is easiest on the stomach. I took it in the morning and it also increased my energy level by a huge amount.

The other mainstay for treating erythromelalgia is magnesium. Too much can cause loose stools, and there are many different forms of magnesium. This is the brand I've come to use, two capsules/day:
http://www.amazon.com/gp/product/B00772DITE

 

[Rebecca2z]

Hi @CFS_for_19_years , thank you for all your great info ! Info like that could help others who suffer from erythromelalgia and without the risks of RTX.

Yes I am very surprised about my erythromelalgia responding to the RTX, but I can't contribute it to anything else. When the RTX wore off the erythromelalgia came back and after the next two rounds kicked in the erythromelalgia went away.

I have just started taking magnesium in the last 3 weeks actually to get the benefit of loose stools and it works really well for that ! I am taking a powder that is mixed with water due to my motility problems ( easier on my gut than pills.) This is one I take http://www.amazon.com/gp/product/B00BPUY3W0?psc=1&redirect=true&ref_=oh_aui_detailpage_o02_s00

I tried everything you mentioned, "Effexor and Lyrica, and a variety of antidepressants" I was also on Gabapentin and these meds did nothing to help with the pain and they made my fatigue much worse. I haven't had one episode since the RTX kicked in. I don't have a clue why it solved this problem but I am thrilled that it did.

I am on the erythromelalgia forum and I told people on there that I found something that worked for my erythromelalgia but of course I have no idea if this would work for others. I also explained I didn't take the RTX for my erythromelalgia but for other problems. I wanted to share my experience because as you know this is a very painful, disabling condition.

 

[CFS_for_19_years]

Rebecca, I've also taken the magnesium powder you mentioned and it tastes very good besides; it's just a little harder on the pocketbook though.

I've joined two erythromelalgia Yahoo groups in the past. Which erythromelalgia forum are you on? I wouldn't want to be left out! There may be some people on the EM forum with rheumatic diseases or co-existing diseases who might benefit from it. Rituxan has so many risks that many doctors are afraid to prescribe it for anything other than proven uses.

The oddest help I've found for EM is quetiapine (Seroquel). When I stopped taking it, my EM pain increased, so I've just stayed on it. It can make you feel zombie-ish during the day so it's not a great fit for everyone. It can also help with sleep. I searched the Internet to see if anyone with EM had ever benefited from Seroquel and I couldn't find anyone.

Other than that, I take morphine on a daily basis and Vicodin as I need it.

 

[Rebecca2z]

Hi again @CFS_for_19_years , I am on this forum as hotfeet2z : http://www.livingwitherythromelalgia.org/forum/topics/rituxan-solved-my-erythromelalgia
That is interesting about quetiapine (Seroquel), I will google that, even though I am out of pain. I am sorry you have to take such strong pain meds, but if it helps the pain it is worth it.

There is a women on line with erythromelalgia and she wanted both her feet cut off, have you read her story ? Took her a while to find a doctor who would do it, she had one foot cut off but never went through with the second foot.
For anyone who doesn't know about this condition that is how painful it is.

I was living with my feet in ice buckets, which I know you are not suppose to do but when the pain is that bad you want relief anyway you can get it no matter the damage that it might cause down the road.
The heat in the summer was killer on already burning feet. I couldn't walk across the parking lot. I was almost wheel chair bound. I had to stop all shopping because of the burning. To be free of that pain is something I say thank you to every single day.

 

[funkyqueen]

I am very happy, very very happy, Rebecca, that you have been able to qualify you for another round of Rtx !
I discovered this evening your posts, that one where you said that you had a relapse, and this one, where you said you're going better again, thanks to Ritux!
I am happy for you, and your post where you explained your relapse when B cells began to return brought me tears to the eyes!
I wish you to improve again and again and again!
It's great that you have no more need the tube to feed you, now

I discovered this evening too, your symptoms improved, and ...I smiled ...
For my part, it is not exactly all the sames symptoms improved /on the same order of importance, but I admit it's disturbing to read you ... !!!
However, I understood that you had others autoimmune conditions in addition to M.E ... but not so much! (Nature has not been kind to you : - /, except for your sublime face, I did not believe your age, you're just superb!)


To give some news about my Rituximab's experience, I continue to answer to it, but the response's peak is (for now ???) behind me,i guess ... : - /.
I had a relapse phase in my response (not sure if you understood me, lol, it's already hard to express me in French, hehehe, so in English ... ) ... So, I had a "response down", (perhaps better said), after my 5th infusion ,because I had bronchitis, that I ascribe to Ritux (knowing me as immunocompromised because (thanks !!!) to Ritux ,I am enormously careful to not fall ill (wearing FFP2 masks, liters of hydro-alcoholic gel, etc.).

It was horror for me to see the slow return of some (not all) improved symptoms by Ritux, when I got this bronchitis, which it took three months to cured (thank you immunosuppression, arfff : -/, but bronchitis is a knowed pretty common side effect of Rtx)
I received in late January my last infusion of a gram of Ritux provided by the protocol, and I feel better again ...
Lord, I can not wait 2018 that official studies on the effectiveness of Ritux in ME will be published ......it is soooooo long for us...
Like Rebecca, I am very uncomfortable, to come here to say that Ritux help me, as I know from personal experience, as i had envy a lot ( envy, not jalousy ) for example, Dr. Maria Gjerpe who received Ritux (and she is now cured (totally !!!), and my heart is broken, to the idea of hurting any of you, guys ...
But I thought that I had to come and give some news ,to tell you to keep hope, and even write again "yes, Rituximab can help ME patients, even severe" ...
Take care xxx

 

[Rebecca2z]

Hello @funkyqueen !

So great hear to from you. Thank you for all your encouragement and kind words. I have been wondering how you are doing. I understood your post and your English is great !
Sorry to hear you had bronchitis but yes I believe lung infections can be associated with RTX. That is one of the reasons I am happy I am on IVIG, it helps so much with infections. But these infections are treatable in most ( although it takes time)

I am see you 'get it' about posting on how well we are doing from the RTX, I agree about envy not jealously. I used to be envious of others who are getting help. We all want to be well. I do agree with others too that I am happy to read something positive and it gives me hope. So I understand both sides.

I hope you will keep us updated and continue to give hope to us all !!

(edit: change in wording)
XXOO
Rebecca

 

[Avena]

I am a long time severe MEsufferer, and I just waited to let you know how great it is to follow your journeys, @funkyqueen and @Rebecca2z Please keep posting!

Of course I'm hoping to be able to join you on the other side one day, but in the meantime I will always enjoy reading success stories from the same range of severely and symptoms as myself. There are not many of them out there... It gives me hope.