Off prednisolone

[Karendeena]

Tapered very slowly but took my final dosage just over 3 weeks ago.

Have some stiffness in neck at shoulders but I can cope.

My question is, "Has anyone else had to come off pred due to the side effects? I seemed to be ok for a few months (in fact couldn't sleep and raging apetite) but then the rot set in! Experienced quite a bit of swelling in the ankles bloating, wind etc, followed by GI issues. GP thought it might be lansoprazole so took me off that and settled a bit, however bouts of diarrhoea, flatulence, changes in bowel habits and extreme anxiety pursued. In fact I developed health anxiety and IBS (seen gastroentorologist)

I can't go back on these drugs, does anyone else have these issues and if so how did you move forward?

Thanks, Karen

[PMRpro Ambassador]

Have all those adverse effects settled now you are off pred?

In all the years I have been on the forums, 3 of them and well over 12 years in total, I have come across only a very small number of people who really had to stop pred and they were all because of mental health problems. The majority of adverse effects of pred can be managed or mitigated when you know how. Some of the problems are possibly less due to pred than due to the underlying autoimmune condition itself - as I can attest and there were several things I had problems with during the 5 years I had PMR without it being diagnosed or treated that are usually claimed to be due to pred.

Some people react to one form of corticosteroid but not to others (I had awful problems with methyl prednisolone but have none at all with prednisolone or prednisone) so it may be worth trying another form if you need it, including the depot Medrone deep intramuscular injections. Some people do find methotrexate helps them - although it is only successful in a small proportion of PMR patients. In the event the PMR progresses to GCA, where high dose pred is the only reliable protection against total and irreversible loss of vision, it would be worth your rheumatologist using tocilizumab which definitely works for GCA - would also work for PMR too but it isn't approved for PMR and so not available on the NHS.

[Karendeena in reply to PMRpro]

Thanks PMRpro, I have always had a degree of general anxiety but it has just been much much worse over the last few months, as it was getting out of control my GP wanted me off prednisolone as I had these tendencies.Yes, I am off the pred, shoulders are a bit stiff especially in the morning but I really do need to find another way.

I have had lots of tests, bloods, stool samples etc but nothing can be found, having a colonoscopy but the gastroentorologist is telling me IBS, it does seem certain foods are a trigger but never had this before.

Last test my ESR was slightly raised at 21 (apparently 30 is the limit for a female over 50) but much less than when I was first diagnosed.

I really can't cope with the obsessions I have developed so until these are under control I can't see a way forward.

My GP managed my condition (8 months ago) and I was never referred to rheumatology. Not sure I can manage anymore consultants either at the moment as that is part of the snxiety.

Waiting for colonoscopy and also have 6 month visits to EP for afib. I have become a nervous wreck these last few months 😢

[PMRpro Ambassador in reply to Karendeena]

Try heat before you get out of bed - an electric blanket is ideal - and then do stretching in the shower under warm water - the heat lets you keep moving and once you can get the muscles going it does improve a bit. I did an aquafit class - only in warm water, if it was cool I went in the hot tub or steam room instead - and then when possible did a Pilates or Iyengha yoga class, both very adapted for me but once they were done I could move fairly well. Didn't do much for the pain though - only pred did that. Sitting with my back against a radiator also helped. I had a lot of inflammation in the hip bursae and that almost stopped me walking so I became almost housebound later on but not doing stairs made a massive difference to that. I came here to our flat which has a lift and just that alone allowed me to walk to the village and get up the mountain to ski - and the hip and arm movement for skiing was also very good for getting moving.

I also have afib - the cardiologist is confident it is due to the autoimmune part of PMR having damaged the sinus node as it only started about the same time as the other PMR symptoms. It is fairly well controlled with medication and I have a pacemaker - bradycardia is common in afib anyway without the medication effects.

Had you had a viral infection in the few months before the PMR or IBS symptoms started?

[cranberryt]

I have also had serious GI symptoms but it turns out I have celiac and IBD… also awaiting a colonoscopy to dx the type of IBD. The steroids had nothing to do with the other two. All 3 are auto immune conditions and once you have one, it is common to develop more. I would ask the dr to dig deeper on the other issues to mitigate then in preparation for going back on prednisone if needed. I also had trouble sleeping and anxiety on higher doses but those went away as my dose dropped.

[Hidden]

Hi Karen I totally understand your dilemma. I had some of the side effects you refer to. I tapered from 15 to zero over 10 months. I have been pred free for 8 months. I usually have alight pain in my fingers when I awake and generally am stiffer than I used to be in my legs primarily. I am sticking with it on the days I play golf I use ibuprofen to mitigate any discomfort. I am hoping that my adrenal function will inprove and I will remain cured. It's worth it to avoid the dreadful side effects of anxiety depression and spontaneous tears. Good luck

[Artandpoetry]

Not sure if my journey can help you because we are all so different with experiences. Like you. my experiences of being on pred were horrendous. Two of the worst were a constant tight band round my chest and weak skin leading to large scar on shoulder when skin washed off in the shower!!Very disinterested doc said I have to work out my own route if I want to get off pred. After 18 months got off tabs, now clear for 18 months. Was doing really well till 2nd jab. Since then have achy joints and limited energy. But the place I’m in now is still so much better that my pred journey. Am desperately hoping that my adrenals will steadily improve. Perhaps I will regret my choices some time in the future?.? I mega on nutritious food, gentle stretches and exercises and plenty of rest. I wish you good luck with your journey. I did not find this site till I was off meds, so it was a lone journey.

[Karendeena in reply to Artandpoetry]

Hi Artandpoertry, if you don't mind me asking, how do you know if your adrenals are suffering? I have read that I could have all sorts of withdrawal symptoms for up to 8 weeks and beyond.Have lost about 5lb in weight but noticed the ankles and midriff have stopped swelling and my double chin has all but disappeared. I did notice when on pred I felt very bloated and uncomfortable. As my GP said pred is the best for reducing inflammation but unfortunately comes with a host of nasty side effects.

I am struggling a bit with the shoulder pain particularly in the night and first thing in the morning but I am determined not to go back on pred if I can avoid it.

[Karenjaninaz]

Karen, any of the drugs related to Lanzoprazole give me terrible gas and cramps. I have IBS for many years but prednisone never bothered it. It’s best diet controlled. There is a website with lots of help cold help for ibs.com. You’re a lots of tips. I can use pepcid which is an H2 blocker.

[Karendeena in reply to Karenjaninaz]

Thanks a lot, I do think lansoprazole was the initial trigger for the IBS. I have had weeks of urgency to pass stools as soon as I get out of bed and to be honest I found it quite scary as undigested food was being passed and forgive me for saying this but all different colours and consistencies. My gastroentorologist says it's because my system was speeding up and although alarming was nothing to be concerned about. The trouble is I have developed the gut brain axis which is just a ferris wheel of anxiety I need to break . I have found peppermint oil capsules seem to help. Thanks for your response

[PMRpro Ambassador in reply to Karendeena]

Just occurred to me to ask - do you take calcium supplements? They had that sort of effect on my husband - calcium carbonate was awful, calcium citrate was K though. I assume it was the calcium carbonate acting as an antacid that did it since PPIs were even worse.

[Karendeena in reply to PMRpro]

PMRpro, no haven't taken any calcium supplements although the gastroentorologist said I should have been on these and Vit D. Neck and shoulder pain back, particularly in the night when I attempt to turn over, bearable in the day, I am just to scared to go back on pred at least until they have confirmed my IBS diagnosis

[PMRpro Ambassador in reply to Karendeena]

Just wondered - they and the PPIs (omeprazole etc) have a reputation for causing stomach problems,

[Karendeena in reply to PMRpro]

Thanks PMRpro, just think it's going to take a while as my system has really changed since taking them 😥

[Karendeena]

Thanks Dad2Cue, I am not sure if I will be able to stay off the prednisolone as I am really struggling with the neck and shoulder pain, although my GP and Physio think this is more posture related and shoulder tension as I am under a lot of stress and hold my shoulders up (if that makes sense). I really don't want to go back on them until my GI has been sorted/settled. According to gastroentorologist something has sparked off IBS. Never ever had bowel problems before taking pred and lansoprozole and this didn't really start until I had been on them about 3 months, although I did get bloating and some discomfort around the midriff.I am not sure if it was the pred or lansoprozole but something has definitely changed my digestive system 😥