I'M NEW HERE AND ON PREDNISOLONE FOR A YEAR FOR GCA - PMRGCAuk

PMRGCAuk

16,793 members31,124 posts

I'M NEW HERE AND ON PREDNISOLONE FOR A YEAR FOR GCA

technogran profile image

Since being diagnosed last October with GCA and prescribed Prednisolone, I've had breathing difficulties and fluid retention for which I am being treated but not very successfully - are the two connected? Does any other member have these difficulties. I've Googled and while there is no established evidence that Prednisolone can cause these symptoms there is anecdotal evidence of this effect. I am tapering and currently down for the second time to 15mg and am also on a drug trial of Roactemra which is a steroid sparing. I've had 2 xrays, a CT scan and a peak flow test at the hospital but apart from mild chronic bronchitis (which I've never had before) nothing has shown up.

Any advice would be most welcome.

59 Replies

Hi and welcome! YES! I too have had shortness of breath (but not fluid retention) since being put on Prednisolone, 23 months ago, for both GCA & PMR. Neither my GP nor my Rheumy would say (conclusively) that my shortness of breath was related to the meds; and scans and breathing tests were ordered... Nothing ever showed up, thank goodness, but to this day I continue to experience shortness of breath even when walking normally, on flat ground. I blame the Pred!!!! I'm convinced of it! Best of luck to you!

technogran profile image
technogran in reply to

Thanks for your reassurance. The doc is thinking of sending me to cardiology next but I'm convinced its the steroids. The breathlessness is really impacting on my habits as I'm lucky if I can walk for more than a few minutes without gasping.

in reply to technogran

Yup, I had several cardio tests and thank goodness everything was normal. It started when I started taking the steroids... 🤷🏻‍♀️

PS - I make frequent stops and take rests... especially on hills! Killer!

PMRpro profile image
PMRproAmbassador

Both are recognised adverse effects of pred and there is at least one study referring to it.

Fluid retention can be improved by reducing salt and carbohydrates in your diet - reducing carbs has other benefits too.

technogran profile image
technogran in reply to PMRpro

Thanks for that, its just a shame this info hasn't been circulated to the professionals. I have copies an American case report which agrees that Prednisone may cause episodes of dyspnoea.

in reply to PMRpro

Neither my GP, nor my Rheumy knew anything about breathless being associated with Pred. I was sent for two cardio tests, a chest x-ray and a chest MRI. 🤷🏻‍♀️

PMRpro profile image
PMRproAmbassador in reply to

The Dutch study commented that it might save a lot of unnecessary cardiac investigations! Still only an n=1 population though

njmonline.nl/getpdf.php?id=...

in reply to PMRpro

🤷🏻‍♀️ I guess my UK doctors hadn't read the 2011 Dutch study.

in reply to

Being breathless is a chronic problem for me since being diagnosed. I did complain of exercise intolerance and my GP did order a test ... I think it was an exercise echocardiogram. The test was flawed in my opinion because I had great pride in my endurance for extreme types of exercise and heavy labor (not the pregnancy kind)!!

I did the test and it was "WNL"--- within normal limits. I maintained that my endurance was much better than "normal" and my own assessment of the test was "abnormal for me". My GP did order a pulmonary function test but I cancelled it.

After a year of daily prednisone I was on a week long 500 mile bicycle fun ride in July. I decided to quit after 350 miles because of sheer exhaustion and shortness of breath. I thought I was going to die on the spot so I checked my pulse and it was very irregular because of skipped beats. I reported it to my GP when I got home. He wanted me to come in for an EKG. I was still having skipped beats and the machine picked up frequent PVC's and left ventricular hypertrophy (LVH). When I asked what caused that he just said BP usually. He checked my BP himself and it was normal and all prior BP checks also had been normal. He just told me to check it at home 3-4 times per day.

I got a week of normal readings until I got one first thing in the morning soon after I woke up ... 200/110. I went to the emergency room---they referred me to my GP--GP referred me to a cardiologist--- cardiologist ordered another echocardiogram. The cardiologist confirmed that my heart was being "stretched" because of high BP due to prednisone.

Three BP pills later, BP was controlled and LVH improved after about a year. I continued to complain of being extremely short of breath with any exertion. This was mostly blamed on weight gain and de-conditioning because of pred and PMR.

When I had a massive pulmonary embolism my GP apologized profusely for possibly missing something. Multiple specialists couldn't really determine the cause but prednisone probably played a role.

At my last rheum visit I mentioned shortness of breath again so my rheum ordered a chest x-ray. It wasn't what the rheum thought it could be but it did show a tortuous aorta and atelectasis. I see my rheum again next week.

There are many possibilities for explaining shortness of breath but prednisone always seems to be implicated.

PMRpro profile image
PMRproAmbassador in reply to

For us I assume you mean? But MY shortness of breath is due to atrial fibrillation - which has nothing to do with pred but is better managed with more pred since it is linked to the vasculitis.

in reply to PMRpro

I occasionally see atrial fib listed as a side effect of prednisone as well.

PMRpro profile image
PMRproAmbassador in reply to

Possiby - however, mine is nothing to do with pred - but it is to do with the PMR.

Or... GCA could potentially cause respiratory problems? When I have bad flares my lungs always feel kind of inflamed when I breathe.

Food for thought but I only started getting these symptoms after I started on Prednisolone and my breathlessness has been continuous irrespective of dosage.

And, welcome to HU 💕💕!

Thanks very much

I certainly had the sensation of oxygen starvation when I was on a higher dose - I found it quite frightening. I also get sinus- like symptoms with a completely blocked nose and have been sleeping propped up with a fan blowing in my face ( sometimes) I just got prescribed nasal drops (Dymista) and they do work in eventually allowing me to breathe through my nose. I think it makes me panic a bit, but the GP seems relaxed about it. I never had any trouble before PMR and Pred.

I think most of us have the water retention to some degree. It’s largely responsible for the puffy faces we get.

I would be concerned about the mild bronchitis diagnosis. Are they treating you?

I imagine that you have had heart checks? I would want that ruled out.

Welcome by the way,

PS. Are you familiar with any documented side effects of Riactemra? It could be the culprit.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

The moonface is actually as much due to fat deposits as fluid - the excess steroid influences the places where the fat is stored!

SheffieldJane profile image
SheffieldJane in reply to PMRpro

In the early days my face would vary in its puffiness which I put down to fluid, tummy too. Not so much now. Diet seems a factor, sugar cravings were awful.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Carbs and salt do both lead to more fluid being retained.

I have been on prednisone since October 2018 Feel like I have post nasal drip constantly especially at night when in bed. Retaining tons of fluid. I blame everything on prednisone.

GCA Feb 2018...Currently 18.5 mg prednisone. Third taper/three flares

Shortness of breath always. On the doses above 25 I had to sleep propped up and always felt like I was being strangled by the extra fat and edema in the front of my neck. It was miserable. I still experience shortness of breath; it's the pred and the GCA. My understanding is GCA can restrict blood flow/oxygen transport in the lungs.

Come here for support and knowledge from other patients; doctors don't understand this disease as well as they could,should; as we need them to. Arm yourself with knowledge, and be your own advocate.

I'm glad you found this site. It has been a tremendous blessing to me, and I know it will be for you as well.

technogran profile image
technogran in reply to Blurry62

Thanks so much, I wish I'd joined sooner cos I'm just realising how much hearing from fellow sufferers is so much more informative. I agree with you that knowledge is power and have read/googled extensively but have never found out as much as I have from just a short exposure to this site so I am certain it will prove to be a real blessing on this journey to health that we're all on.

Last Oct for me too. GCA only. Down to 22/25 again. Hope to start Actemra soon; if insurance will cover it (not likely in the US). Maybe drug co. will provide. We'll see. Bronchitis twice, but no troubling fluid retention. I do have a few pred pads as we call them. Isolated spots with some swelling; a bit in my face which I don't mind. Fills in the fine lines...lol. Muscle weakness is definitely affecting me, though not as much if I take magnesium regularly and eat bananas and drink electrolyte rich drinks now and again... I think they all help. Idk for sure. Lol

technogran profile image
technogran in reply to Dreamer43

Thanks. I'm pleased you mentioned muscle weakness cos I too suffer from it. I had a hip replacement a few years ago and was left with leg length discrepancy which affected my walking as did months of inertia with the pain of GCA. I went to physiotherapy and sometimes do the exercises but not when I feel ill. I'm going to try the magnesium and see if it helps.

I haven't experienced shortness of breath, but when I was on higher doses of pred (from 60 mg down to about 15 mg per day) I did have fluid retention, mainly in my feet, calves and ankles. It was so bad I ended up giving away several pairs of shoes, something I now regret since, once I reduced below 15 mg, the fluid retention stopped and my feet and legs are back to normal. By the way I understand it isn't a good idea to take diuretics when on pred.

Mines just came and never left in fact I had leakage in one of my legs.

Oh bad luck. I hope it clears up soon like mine did.

I didn't have shortness of breathe but definitely fluid retention. The best advice any doctor ever gave me was my first Rheumy, she sent me for a set of 6 free Pilates classes at the hospital to try and I kept on with Pilates since, they have helped with mobility on the high doses, kept me moving which helps the fluid retention and helped with muscle weakness, if I miss a few weeks on holiday or something, I really notice it.

technogran profile image
technogran in reply to Hellyowl

I'm pleased the Pilates help you. I have considered it but think I would have to be a wee bit fitter than I am now to even attempt the exercises. Its great that your hospital has these classes though. I would have to go to a general class but will definitely keep your words in mind, thanks.

The prednisone definitely affects my breathing capacity. I was very active, ex-competitor runner, in my middle years. I find that even a small dose, down to 4.5mg affects me. I know of no remedy so I just "soldier on" hoping it will get better as my adrenals start working again.

technogran profile image
technogran in reply to Noosat

Thanks for that, its just good to hear others are affected with these symptoms.

Forgot to say that at end of day my ankles are slightly swollen. It would not be obvious to anyone else, but we, of course, monitor our bodies closely. :)

technogran profile image
technogran in reply to Noosat

No my legs up to knees are swollen and one of my legs was leaking fluid so upped the Frusemide from 40mg to 60mg which has stopped it but legs still swollen.

Noosat profile image
Noosat in reply to technogran

I hope you manage to get good care and advice.

I can only speak from my experience clearly but I had quite scary tight chest and feeling if being bloated after starting pred. I almost straight away went on a strict Keto diet, very low carb high fat, and both went very quickly. I don't believe it's coincidence.

technogran profile image
technogran in reply to Lafete

Very interesting, I will give it some more thought, thanks.

Hi prednisone is a shit drug, I inhaled toxic chemicals in 2016 and was on 50 mg per day for.near a year. Breathing difficulties was part of the poisoning I got, but then a thoracic cartalige collapse, found myself with nerve difficulties and also advanced arthritis in both shoulders. Muscle fibres are seperating

Chemicals can have these effects but my GP says good chance prednisone attributed to it as well. I am now.on 4 mg per day for PMR which was caused by the inhalation of the chemicals for over 9 hours. Environmental changes it says causes PMR. Try to get off the prednisone.

PMRpro profile image
PMRproAmbassador in reply to PoisonedinAus

Prednisone is a powerful antiinflammatory that saves sight and lives. If it is indicated it is not "shit drug", it can be a miracle.

I appreciate you have had an awful experience, and were on a very high dose for a long time. However for most people on this forum it has given them their life back and for many saved their sight. Please do not tell them to get off pred.

PoisonedinAus profile image
PoisonedinAus in reply to PMRpro

Appreciate your reply, but even GP will tell us it is a shit drug, as it has so many side effects. There is alternative but very expensive. I note some.people did.mention they are on the alternative as had too many side effects with prednisone. It may be a miracle.drug, and I admit it helped me. When I say get off it, I should.say try to.reduce the mg intake to as low as you can. We all have varying effects on it, and yes depends on dose. Mine was Industrial Strength.

PMRpro profile image
PMRproAmbassador in reply to PoisonedinAus

There is NOT an approved alternative drug for PMR and Actemra/tocilizumab is also a potentially high risk alternative, irrespective of price, which even for GCA is only available in many countries on individual approval for resistant cases. It is also not a 100% answer - it works instead of pred for about half of cases, the rest continue to need pred at some level. We have several people on the forums who have had to stop tocilizumab because of the adverse effects they have experienced, in one or two they were life-threatening.

PoisonedinAus profile image
PoisonedinAus in reply to PMRpro

Thanks for telling me this, really helps me as my Rheumatologist is currently thinking of switching my prednisone. Maybe I need to rethink.

PMRpro profile image
PMRproAmbassador in reply to PoisonedinAus

It has some advantages - and how good/bad it is is a bit disputed. It does work brilliantly for some people and is probably worth trying. There are contraindications - for example, if I wanted to try it I would have to take antibiotics for 9 months because I have been in close contact with TB in the past. It raises cholesterol, it predisposes you to infections, if you have an infection you suspend the injections. If you have to suspend the injections you might have to raise the pred dose again. It isn't a simple cut and dried "this is a perfect answer to GCA/PMR".

Make sure you have read all about it and thought and discussed it properly.

webmd.com/drugs/2/drug-1653...

PoisonedinAus profile image
PoisonedinAus in reply to PMRpro

Will do. Once again thanks for the heads up. Last year I underwent a three half hour op.to get a cyst out of my jaw. Attributed to prednisone and got an infection. There don't seem to be any clean cut remedies. When I was poisoned months of detect as the liver was inflamed. Anyway. Thanks. Made an appointment for rheumatologist for next month to talk.about alternative. Will let you know how it goes.

PMRpro profile image
PMRproAmbassador in reply to PoisonedinAus

If you have had liver problems then your alternatives to try to reduce the dose of pred are limited I would have thought. Unfortunately it isn't a simple desire.

in reply to PMRpro

And prednisone is better???

webmd.com/drugs/2/drug-6007...

"Make sure you have read all about it and thought and discussed it properly."

PMRpro profile image
PMRproAmbassador in reply to

That is NOT what I said.

in reply to PoisonedinAus

Hello & Welcome to the Forum,

I think you have a different view of Pred to the rest of us as your journey is very different to most of ours; we all must speak as we find & l’d call it a doubled edge sword, l was completely unable to get out of bed, walk up or down stairs, get out of a chair, dress myself, drive a car, the list is endless.......

Then for me the Pred was like a miracle within three days l saw the difference, then after a week l was totally back to the old me. Since then things haven’t always run as smoothly as l’d have liked but that is the nature of the disease.

I was at a Talk with a Professor of Rheumatology last week & the discussion was mainly on GCA & the option of having Tocilizumab added but at this time as a Trial & then only when all other options have failed.

He talked about the future of Treatment for PMR & said maybe, just maybe there will be options in the future.

If you have questions please go ahead & ask but l respectively ask you to not refer the Prednisolone a ‘shit’ drug, many members here owe their eyesight to Prednisolone along with those who are now able to return to some semblance of normality.

Once Again, Welcome

MrsNails

Moderator

PoisonedinAus profile image
PoisonedinAus in reply to

My apologies for calling it a shit drug. Yes I agree with everyone in the forum that it is a musical drug that allows us to get around and lead as normal alife as is possible. With being on very high dose for such a long time unfortunately for me the side effects where enormous. Abscesses that required operation to remove, cataract both eyes, mouth ulcers, it seems if there was a side effect I got most of them. But this I also must add goes hand in hand with the highly toxic chemicals I inhaled initially which triggered it all off. At 6am one morning I was unable to move, stuck inbed and Paramedics attending. 20mg of morphene before they could move me. After a week.ir so on Pred yes I was mobile, bot greatly mobile but mobile. So again, sorry about the drug name calling, my own experiences which still dealing with detox and side effects. BUT I am getting around most of the time. Good luck again with your reform and hope that the alternative is available for your choice in the near future.

technogran profile image
technogran in reply to PMRpro

I've been on Actemra since December. I was given a leaflet at the time so do understand its purpose but must say I thought going on a drug trial would mean regular monitoring of symptoms and a written record of reactions. I have had blood tests but not as a matter of routine and I don't know if its helping me or not as I have nothing to compare it with. I am concerned at the number of potential side effects it has and that there has not been any long term studies achieved yet.

PMRpro profile image
PMRproAmbassador in reply to technogran

I doubt you are on a "clinical trial" if you aren't having very detailed and regular monitoring. Are you sure they didn't say "We'd like to give you a trial on Actemra?" or something. Which is not the same thing at all.

technogran profile image
technogran in reply to PMRpro

Thanks, following a visit to the consultant, I am now in a position to say you are right. I wasn't on a trial for Roactemra after all because the trial had been carried out in 2018 and was paid for by the drug company for a 12 month period, however, the Scottish NHS has taken this on board and is supplying it to some patients for a longer period. It seems that the English NHS is not so forthcoming

PMRpro profile image
PMRproAmbassador in reply to technogran

The long term studies in GCA are underway - although they do have longer term experience of using tocilizumab/Actemra in rheumatoid arthritis.

You are not a doctor. Not one of us 'likes' being on Pred but it helps us to lead a better life.

Constance, I agree it helps. It helped.me. and as it Was pointed out to.me by others and now.you, it does help.us lead a better life. We can get out of.bed, we can move around. All I am saying through my experience, and this is what the forum is about, share experiences, it has not been a great drug long term for me. There is an alternative but expensive.

in reply to PoisonedinAus

I have replied to you above but the alternative you talk about is not readily available as it’s still in the testing stages for GCA in the U.K. & it has to be approved when all other options have failed.....

PoisonedinAus profile image
PoisonedinAus in reply to

Good luck with everything. I hope more.options become available, and the best one would be a cure!

Believe me I am trying my best to get off Prednisolone but I've had flares due to over zealous tapering so am going to be prudent as I detest having to go up the ladder again. Thanks.

I totally understand. It is.a great drug when used or prescribed wisely and we are monitored. I.am upset with it because of my experiences due to.the high dose I had to be on in the first couple of years. Yes, dropping back.and having a flare up then having to go high again makes it worse, as you said going back up the ladder. We just have to trust the drugs we are given by the experts in the hope.we lead as normal.life as possible.

You may also like...