Feel better on Prednisone?

[alice1]

if i find the cortef to remain helpful at the dose i'm on then so be it if it's for the rest of my life.
i'm at the point where being that fatigued is wearing my spirit down and i know that's worse for me.
i hope you all feel better whatever your decision is.

 

[ramakentesh]

As others have said it is routinely prescribed to suppress autoimmune illnesses during a flare up - such as Crohns, Ankylosing Spondylitis and My. Gravis. if it helps during a flare up of your CFS then you could perhaps wonder whether yours has an autoimmune basis.

 

[heapsreal]

neilk have u tried low dose hydrocort, many use it like 5mg when they wake up and 5mg at noon, and no more then 20mg total and is said not to be supressive of natural cortisol and supposedly rest the adrenals. Doses like this are replacement only and shouldnt suppress immune system??? cheers!!!

 

[Nielk]

neilk have u tried low dose hydrocort, many use it like 5mg when they wake up and 5mg at noon, and no more then 20mg total and is said not to be supressive of natural cortisol and supposedly rest the adrenals. Doses like this are replacement only and shouldnt suppress immune system??? cheers!!!

I'll look into it heapsreal - thank you.

 

[bertiedog]

As you are all discussing the use of steroids in our illness I feel I should let you know of my experience of being on Prednisolone around 5mg daily plus I seem to need a tiny bit more, either 1mg extra in the morning or 2.5mg h/c morning and late afternoon. I take 2.5mg Pred on waking which is usually around 5 am plus tab Fludrocortisone plus thyroid meds and then I go back to sleep till around 7.30 when I take the extra 1 mg Pred or the 2.5 h/c to give me extra energy for the morning.

Recently I found a diary when I wasnt taking any steroid and from 2001 my life was hell, daily bouts of severe dizziness and migraines. Also frequent tummy bugs and throat infections.

I have been taking this dose or a bit less since late 2002 together with thyroid meds and there is no doubt that I cannot live without it now. There was a period in 2005 when I seemed to do ok without any steroid for a couple of months and I weaned off but within 3 months I had 2 adrenal crisis of severe vomiting and diahorrea which came out of the blue. At the time I didnt know they were adrenal crises but during the 2nd one I passed out on the loo and couldnt come too until my husband got some h/c for me. It took around 10 minutes for the blackness to go away but I couldnt get off the floor, he had to drag me into the lounge and after about 20 minutes onto the sofa. I was like a dead weight and could do nothing to help myself. My bp was around 78/45 I think.

It was extremely frightening and I will never forget it and because of this I always wear a Medic Alert bracelet.

I first got sick with CFS/ME in 1979 which was after 2 weeks of flu. After that the vertigo attacks and migraine started which never went away although I had good energy until 1996 but I was always getting sick and finally crashed in 2000 one year before menopause. Undoubtedly my hormones played a huge part in my illness and continue to do so I feel.

Its difficult to know whether taking the steroids originally below 5mg caused them to be completely suppressed or whether in fact it was a progressive thing or autoimmune because in 2002 it was found that I had autoimmune thyroid disease (hashimotos). It is fairly common when one has Hashis to have Addisons too.

There is no question I have benefited from the steroids and felt like I got my life back but they definitely havent been a complete answer because I have never been able to walk for longer than a maximum of 25 minutes and often its only 15 minutes. The energy just runs out and Dr Myhills ATP Profile showed this is definitely happening in my case. I do walk my dog most days unless I have a throat infection. I also do yoga most weeks and lift light weights 3 times a week.

I still get frequent throat infections in the winter but can be quite well in the summer and feel well on lots of days. I also recover quite quickly from overdoing it. Usually the next day I feel better but sometimes it will take 2 days before feeling good again (but still the energy runs out).

I am left with a constant question mark in my mind. Is my continuing illness just due to an Addisons/Hashis illness or is there more to it? I follow the Addisons forum and note that many on there are wheelchair bound and are much sicker than me so really dont know the answer but at least I am very grateful that I no longer get the most horrendous vertigo spells which scared me so much they were so out of control. I still gets bouts of dizziness if I have a throat infection or have pushed myself too much but its nothing like it used to be.

Originally it was a private doctor who gave me the prescription for Armour and h/c once he saw my 24 hour cortisol/DHEA test results. Actually they didnt look that bad except at midday I was pretty low but what he did note was that I had well over the range DHEA throughout the day and night and he felt sure this was my body asking for more cortisol but the adrenals were unable to produce this and instead threw out huge quantities of DHEA . I think he was proved right because when I did a follow up test after 6 months on the steroid the DHEA was back in range except at night and that is when I was still getting symptoms so he suggested I might do better on Prednisolone because it was longer acting.

Ever since being on the Pred the DHEA is much lower and normal.

I had a DEXA bone scan at the end of 2010 and was delighted that it showed I had the bones of a 30 year old despite being 62 at the time! However I take lots of supplements and have continued with low dose Estrogel and the T3 so think that might be why my bones are good.

However I do have arthritis in my neck but I am assured that so do most people over the age of 40. It doesnt cause too many problems as long as I exercise and have regular massage.

I also have big problems with keeping my blood glucose down, definitely the Pred makes this worse. I did have massive problems with hypoglycaemia before being on the steroid and couldnt keep my blood sugar up which gave me terrible panic attaqcks so now its the opposite and I have to eat very low carb just to keep it within 10% of a normal blood glucose. Fasting blood glucose is normal but it never goes back to fasting levels.

Also I should mention that I have lost 28 lbs since being on the steroid and thyroid meds and now I am very slim so dont believe that you get fat if you take a low dose of steroids if your body needs it.

Hope that this helps some of you to make up your minds as to the pros and cons of helping your adrenals to cope. I should say that I had long standing adrenal issues going way back to my 20s and the situation wasnt helped when in 1975 I lost 4 pints of blood immediately after childbirth which could have caused a hypo function of the pituitary because some symptoms started after that.

Pam

 

[Nielk]

Hi Pam,

Thank you so much for sharing your experience with Prednisone. I wonder-did you have adrenal problems before taking the steroids? Just the fact that with the meds and supplements you are currently taking right now, you are in better shape then before is definitely a good sign.
I don't think that there's any medicine out there that doesn't have it's side effects and dangers. The question is one of balance. If the steroids can make my life bearable (which right now it's not), I have to weigh the consequences and decide if for me, it would be a good decision.
One thing I know and anyone who has been reading this forum knows: there is no one size fits all as far as treatments that work and the dangers of the side effects.
It would be great if I can look at things with hindsight and see what effect this drug will have on my body. My doctor doesn't think I should take it but, then again, he hasn't come up with a solution for me that works!

I think that the severity of our symptoms dictates what risks we are willing to take in order to even improve somewhat. I have not found anything so far that helps me - except my sleep meds- they do put me to sleep but, I'm sure by now I am addicted to them and the quality of sleep is lacking.

I have an appointment with my specialist the end of the month and will discuss it with him.

If anyone else has had any experience with steroids - whether good or bad, I would appreciate if you would share it with me. It would be a help as far as making a decision

 

[bertiedog]

Hi Nielk

Yes I did have many adrenal symptoms before treatment, probably from the end of 1979 onwards (frequent vertigo spells and severe migraines with anxiety). Also from 1989 onwards I developed quite severe sleep and insomnia issues which now are miles better. I actually enjoy going to bed now.

I think the best possible course is if one can find a really knowledgeable Endocrinologist who understands hypo function. Unfortunately I don't know anybody like that now and wish I could find one because I often feel that I could benefit from their knowledge in fine tuning my dose of steroids depending on what is going on in my life at the time. I have kept away from NHS Endos because I know they wouldn't agree with the way I take my thyroid meds (a mixture of T3 and T4 because they believe all one needs is thyroxine but that on its own makes me very toxic and ill).

I also agree that we have to weight up everything for some quality of life and that has always been my attitude.

Good Luck
Pam

 

[Persimmon]

Prednisolone was a wonder drug for me... briefly

A couple of months back I went on a 12-day course of Prednisolone to deal with a back problem. The dosage started at 30mg per day for the first three days, and was reduced in steps until I was on 5mg per day for the final three days. From around day-2 until day-5, my overall health was dramatically improved, but as the dosage dropped these benefits rapidly diminished. On the lower doses there was no obvious benefit for my overall health.

My doctor explained that a prolonged course on the higher dosage would be untenable, due to expected side-effects.

People have diverse mood reactions to Prednisolone, with some experiencing euphoria. In my case, my mood was only marginally altered, and so I concluded that the benefits I experienced couldn't be attributed to mood elevation.

That golden window of improved health was like an "Awakening" moment (for those of you who've seen the Robin Williams film by that name). I didn't return to full normal health, but the change was startling, as if I'd been lifted out of a hole. Benefits included better sleep, cognitive functioning, exercise tolerance and energy levels, and diminished sore throat...

Most startling was regaining my ability to function. I suddenly felt like doing things - so many everyday household tasks suddenly seemed easy and natural things to do, whereas normally they seem difficult and onerous. It certainly helped being able to think clearly. I started to catch up on all manner of things (eg dealing with mail from several months back, that hadn't previously been opened - non-urgent mail often gets tossed aside).

 

[blue sky]

Hello Nielk,

I am not sure that this will be helpful, as it's not comparing apples to apples, but fwiw, I have taken a product called Isocort. This was recommended by an integrative medicine doctor, and I was told it is a natural form of hydorcortisone. The bottle says its "fermented plant derived cortisol, echinacea purpurea" 6.0mg.

I have use this for several years, and couldn't function without it. It lifts my energy and generally reduces all my ME/CFS symptoms. I was originally told that I could take up to 8 pills a day, starting with one and working up from there. I initally worked up to 7 per day, but as I have improved using the methylation and other supports, I have gone down to 1 1/3 currently. Also, I have not had any loss of bone density during the 8 years that I have taken it (this was a major concern for me, as I have osteoporosis). Isocort is sold over the counter (just google it), and many sites charge $29 for 240 tablets (often there is no shipping charge). I don't know if it would work for you, as so many supplements/meds are unique to the individual with ME/CFS.

Good luck and hope you find something that will help you...

 

[Hope123]

Interesting to hear people's reactions.

Hydrocortisone low-dose has been looked at before as a treatment for CFS -- more than a decade ago. IIRC, results were mixed and adrenal suppression was a concern even for the low dose and few months people were on it.

It should be noted that steroids were routinely used for all types of illness in the past and because of concerns over side effects (not just those listed above but also others including the risk of stomach bleeding leading to death in severe cases), it was supplanted by multiple other drugs, which were in fact called "steroid-sparing" medications. So nowadays mostly used for very short-term for flares of some illnesses but usually quickly tapered.

Unless someone has a documented deficiency, my sense has been most ME/CFS specialists do not prescribe it long-term.

 

[Nielk]

I just came back from ENT's appointment. I have my fourth full blown sinus infection in the past four months.
They gave me another anti-biotic to start taking. I have no more strength to fight this. The pain is getting the better of me and I just can't
cope anymore!

 

[heapsreal]

nielk i took 3 abx for about 6 weeks to knock my sinus infection, doxy, tinidine and azithro plus probiotics, and continually using saline nasal sprays. panadeine forte helped with the sinus headaches. know how you feel, i hope u start to improve.

cheers!!!

 

[Nielk]

nielk i took 3 abx for about 6 weeks to knock my sinus infection, doxy, tinidine and azithro plus probiotics, and continually using saline nasal sprays. panadeine forte helped with the sinus headaches. know how you feel, i hope u start to improve.

cheers!!!

heapsreal,

Are you saying that you took antibiotics for 6 weeks for your sinus infection? Is it because it wasn't going away? Mine keep coming - getting better and then -poof, I get hit again. Just like my signature!

 

[heapsreal]

hi nielk,

Im guessing with dates but about october i had sinus infection and did a 2 week abx course and it seemed to go away, but within a few weeks i got that post nasal drip thing and then after a few weeks it went away and i started getting really bad headaches and my blood pressure went up like 160/120, now i know that when the post nasal drip stopped it was my sinuses just fully congested. It took me a couple of weeks to realise it was my sinuses as i didnt have runny nose or post nasal drip, so i was fully clogged up. When i realised this i started on some doxycyline i had on hand hoping this would help, i have 2 docs i can see but had trouble getting into see either of them. I did a 2 week course of the original abx i used in october but with minimal success, then we added the tinidine(spelling) I also had some azithromycin on hand as well so added it to the mix, so probably 6 weeks with doxy, tinidine and azithro and 2 weeks prior just doxy. I didnt start to feel better from this until the last week of abx, i felt really crappy. Once i started the abx the post nasal drip started again which i saw as a good sign as now sinuses starting to drain.

One thing i found really good for opening up the sinuses but they say to use no more then 3 days in a row is an over the counter nose spray with oxymetazoline in it. I would use it 2 days in a row and have a break for 2-3 days. It works within about 5 minutes or so. After opening up as much of the sinuses as i could with this nose spray i would start using lots of saline nose sprays and blow my nose frequently to help remove all the congestion, really hammer it after 30min of using oxymetazoline.

If sinus are really bad i would look at trying atleast 2 abx at the same time for as long as u need to get rid of it. azithromycin is good with some type on penicillin based abx, i used tinadine but probably other good ones out there too.

good luck, it really sucks, why do we need sinuses??
cheers!!!

 

[Nielk]

They put me on Cipro this time but, they took a swab for a culture. I'm supposed to hear from them tomorrow to see what the results are. Depending on the results, they might adjust my meds.
You are right that when you start feeling a post nasal drip, it's a good sign because it means the congestion which was packed is starting to break up. I was so swollen that they had a very hard time getting the thin swab through. (and did I mention very painful?)
I am starting to be obsessed with pain. I'm talking about pain that takes your breath away. I felt like that on Sunday and wanted just t end it all. ( I really mean all)
It's a little better now so I hope it stays this way because I'm scared what I might do if that pain comes back. (even a double dose of Vicodin didn't help)

Sorry I'm getting so down but, that's just the honest truth about the way i feel

 

[*GG*]

I just came back from ENT's appointment. I have my fourth full blown sinus infection in the past four months.
They gave me another anti-biotic to start taking. I have no more strength to fight this. The pain is getting the better of me and I just can't
cope anymore!

I used to have wicked bad crusty's in my nose. I think that would be a sinus infection. My Dr did a swab and prescribed me a compounded medicine from Hopkinto Drug (in MA) the spray is BEG, not sure what it stands for. Their phone number is 508-435-4441 they are located on 52 main st, in case you want to look it up online.

I only used part of the bottle and I have not had issues like in the past! I think I am in better "conditon" than you, so perhaps it would not work for you, but might be worth looking into?

GG

PS PM if you have questions, I will probably lose track of this thread. FYI

 

[WillowJ]

i'm sorry you're in such pain, Nielk. what does your doc say about that?

since you have high c-reactive protein, you might look into other Lupus/RA meds besides prednisone (since your doc doesn't like that for you, though if he had something else in mind as an end goal, maybe he'd consider it in the short term). hydroxychloroquine (Plaquenil) is occasionally used in ME (this takes a long time to start working, though, which is why one might use corticosteroids in the short term while waiting for it to work).

also, if you were on both antibiotics and prednisone, is it possible it was the other kind of antibiotic that made you feel better?

 

[clive powney]

Neil,

I have recently finished a course of prednisolone and like some others on here had a big improvement on it. I was only on 15mg to start (1 x 5mg 3 times a day). Initially I had problems sleeping so I cut down to 2 a day. Although this did reduce the improvement slightly it still made me feel 'alive'. I had a really good christmas, but like others on here I was very worried about the long-term effects. I tailored these off over a week and although my doctor did re-prescribe I am a bit dubious to restart. He has said he can prescribe these more long term if I have raised sediment inflammation levels , otherwise he can't.
I am waiting till I feel really crap and will get a blood test and that will then maybe give me an option to have these long term. I do feel though that my sediment levels won't be raised as they never have done before. That is also part of the reason my second prescription is still sitting in the cupboard. I don't want to feel good for a couple of weeks knowing that the medication is coming to an end. It may be better to keep them for any particularly bad episodes.
I have tried hydrocortisone in the past as I have low adrenal function throughout the whole day (low DHEA also) - only 5mg , but it seemed to have no effect whatsoever.

 

[Nielk]

They just called me from the ENT's office that my culture came back positive for Staph infection. (again!)
I'm flying home (NY) tomorrow. The doctor said that she gave me a ten day supply of Cipro but if I don't feel all better after a week, I should call her and she'll call my pharmacy for another two weeks of it because she said something to the effect that they have to make sure that the infection is gone because in the sinuses it's very close to the bone structure and they want to make sure that it didn't affect the bone.??? I never thought about that possibility. If I wasn't worried before I'm certainly worried now.
I have an appointment with Dr. Enlander next week but then again he is not a sinus expert. I'm thinking that I need a CT scan to make sure everything is ok. It's not normal to keep getting these staph infections.

 

[heapsreal]

nielk ask your doc for some doxycycline to go with your cipro, attack the buggers from a couple of angles, doxy has some effect against staph as well as many other bacterial infections and other antibiotic resistant infections as well.

cheers!!!