Update on my health

[Smallstepsforward]

Good morning from London, I’ve written in the past about my PMR journey. As a recap, I can’t take prednisolone (due to side effects) so have not been taking medication since late October 2021. I’m a masters student in nutrition so have been employing my skills to find a solution in that area! In a previous post I outlined what supplements I’ve been taking which I continue to do. I also lightly exercise daily, eat (as much as I can) an anti inflammatory diet, practice breathwork and try to get a good quality sleep. Sleep has been a huge problem for me which was continuing to be up until late last month. I think that it was impeding my progress. In late November I began a course of 5 elements acupuncture. I was pretty skeptical as I’ve tried so many complimentary therapies to no avail. I’m pleased to report that it seems to have shifted my energy levels for the better, improved my sleep and cognitive function. I’m back studying (I had to take an extended break) and am doing more normal activities during my day. I’ve also increased my exercise intensity although am taking that super slow as I have to balance that finely to avoid a flare up. In terms of pain - my shoulder and upper back pain has gone, hip pain gone. I have residual pain at the backs of my knee s and also at the back of my chest/rib area. I’m stiff in the morning but find a warm electric blanket upon gets me going.

One last thing that I did (after lengthy discussions with my rheumatologist- who believes that a lot of inflammatory conditions are linked with gut issues) was take a course of antibiotics for SIBO - small intestine bacterial overgrowth- which helped greatly too.

So that’s it for me. I know that management of PMR is very much horses for courses but thought I’d post in case anyone found the side effects pf prednisolone outweighed the benefits so couldn’t take it to treat the symptoms.

Have a great day!

[PMRpro Ambassador]

If it works - what's not to like! Though I imagine the price is a bit daunting?

[Smallstepsforward in reply to PMRpro]

Very much worth it as I have got my quality of life back.

[SheffieldJane]

Thank you for the update. It must have taken great dedication and discipline, and some suffering. I am glad you experienced success and the sense of achievement.

[Smallstepsforward in reply to SheffieldJane]

Thanks SheffieldJane, it has taken alot of research, trial and error. I take one day at a time and appreciate every moment that PMR doesn't affect!

[powerwalk]

Hi, good luck, hope things stay good for you. I was just reading one of your previous posts, can I ask if you found the Symprove good? I've gotten it before, but I find it hard to face in the morning ! I would do another course if it's worth it!! I am getting a lot of abdominal pain and bloating from the pred.

[Smallstepsforward in reply to powerwalk]

Hi there - I didn't notice a difference but that is probably because I had SIBO. I have been taking probiotics for candida (a side effect of pred) and will re start symprove after that. Friends swear by it. it is expensive and quite disgusting to drink first thing in the morning! Pred messes with the gut. I ate alot of unpasturised yoghurt with pred and that helped with gut symptoms. I think another member talked about this. It is a complex area - the effect of pred on the gut - especially if you start taking pred with pre existing gut issues. It was trial and error for me.

[powerwalk in reply to Smallstepsforward]

Yes trial and error is right. Always trying to sort something. Thanks, and good luck with everything. Let us know how you go.

[Smallstepsforward in reply to powerwalk]

I will do. One last thing re probiotics and gut health and effects of the pred: I was referred to a gastroenterologist who diagnosed SIBO and IBS. That is why I took the antibiotics for SIBO. If your gut issues continue, it may be worth getting a referral to a gastro via your gp. I am in the Uk so saw (well it was online!) via the NHS.

[powerwalk in reply to Smallstepsforward]

Yes, will do. Tk u.

[Karenjaninaz in reply to powerwalk]

I have IBS however when I took a PPI, For example, gas and bloating was off the charts. I don’t have a problem if I take Pepcid. So it may not be the prednisone that’s causing the problem but the acid reducer.

[PMRpro Ambassador in reply to Karenjaninaz]

Interesting - OH had a form of IBS and he practically exploded if he took a PPI!

[Smallstepsforward in reply to PMRpro]

That sounds awful. Poor thing.

[Smallstepsforward]

I didn’t take any PPIs for that reason. I took other measures. But again I wasn’t on it long enough to make any real physiological changes.

[Greytree]

So interesting. Thanks for posting this. I have been considering not continuing Prednisone (weaning slowly) with my doc's oversight. I just began it in November and do not like the anxiety, heart palpitations, brain fog... I seem to be having at 15mg (starting dose). How long did you take the Prednisone? I only saw the end date, not the beginning. Thanks.

[Smallstepsforward in reply to Greytree]

Hi Greytree. I took it from 25/6/21 to 28/10/21. As I said, I rapidly tapered from 6/10/21 under my second rheumatologist’s supervision. My first rheumatologist was very substandard so I’d swapped in October. The second rheumatologist wanted me to have a petct scan to rule out any other conditions and rule in PMR - which it did.

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

Just because another member could reduce quickly, doesn't automatically mean you can…your illness may be significantly different to theirs.

Looking at a reply in another thread, I would say your issues are related to your tapering. The side effects you mention here are quite normal, but they do reduce once you can taper the Pred in a sensible way.

[Greytree in reply to DorsetLady]

Thanks for the confirmation/encouragement. It’s appreciated.

[PMRpro Ambassador in reply to Greytree]

You may think the side effects of pred are bad - but long term, the adverse effects of unmanaged PMR are often not that different. You may not have had it long enough for them to build up - but I had/have palpitations due to atrial fibrillation caused by the autoimmune side of PMR, brain fog is commonly part of a/i disorders, anxiety and depression stem from being ill and in pain all the time with no end in sight. I also gained weight because of inactivity and comfort eating - didn't gain more on prednisolone, the fat just changed position! Inactivity is also a risk factor for loss of bone density.

I have written a post about it:

healthunlocked.com/pmrgcauk...

[Greytree in reply to PMRpro]

Thanks for the advice and the link. I appreciated the story of your difficult journey and am lucky to have found this site early on.

[Smallstepsforward in reply to Greytree]

Hi again Greytree. I should reiterate that my rapid taper was under the supervision of my rheumatologist and after extensive consultation with him. We both agreed that the side effects of the pred far outweighed any benefit. The pred wasn’t reducing my pain. This was based on the fact that my body doesn’t process prescription drugs well producing the side effects that I had. Everyone is different so I’d continue to consult with your rheumatologist. My PMR is now under control and my rheumatologist continues to monitor my blood markers closely. Which thankfully continue to stay normal. I hope that helps.

[Greytree]

Thanks for all your info. I’m not going to make a move without my rheumatologist - or another. I’m trying to gather info and gauge if my doc has properly diagnosed me, if we are a good fit and if I’m on the best path. Your and other comments here are so helpful. Thank you.

[Smallstepsforward in reply to Greytree]

No worries. It is a difficult condition to treat and you are right that getting all the information together is a good move.