Need to taper asap

[perceptual63]

Steroids have tremendously helped me with all my muscle pain but they are coming with a high cost as they have caused my digestive system to shut down which in turn is causing a lot of really bad gallbladder and pancreatic pain.

So, yesterday I decided to slowly decrease my steroids. My starting dosage from the beginning was 5 mg prednisone twice a day and has been this way for the last 2 ½ months. Last night, I began my first taper and took 4 mg, and this morning I took 5 mg. I'm trying to follow author Kate Gilbert's taper suggestion in her book but this might be too slow for me as doing it this way will have me taper 1 mg every 7 weeks. My digestive system is greatly hurting so the urgency to go faster is there but I also don't want to make myself worse in other ways during this taper process.

If I can, I'm trying to find a sweet spot where I'm addressing both my muscle pain and getting my digestive system working again. But overall, mostly for my digestive system not to have any pain. My digestive pain can hurt as much as unmedicated PMR.

Honestly, I would love to just get off all steroids but unfortunately at this time that's not being realistic.

I recently had a special scan (MRCP) to check the gallbladder, liver, and pancreas and they ended up finding pancreatic cysts instead, which means I have to be monitored yearly to make sure the cysts don't grow and become cancerous.

So eliminating my gallbladder and pancreas pain is imperative to me as pancreatitis (inflammation) leads to pancreatic cysts.

I'm just in this viscous cycle that I need to get out of.

Hopefully, with me decreasing my steroids I can break free from this cycle.

[DorsetLady PMRGCAuk volunteer]

This is slightly quicker taper - healthunlocked.com/pmrgcauk...

..what medication are you taking for digestive issues?

But if you’ve only had PMR since January this year, I fear by reducing Pred too quickly you’ll just end up with more muscular pain….

If you haven’t already, think you need a serious discussion with your doctor to enable you to manage your illnesses/medication.

[perceptual63 in reply to DorsetLady]

Thanks for your reply, DorsetLady.

It's very much appreciated.

I see my rheumatologist on the 7th of June but that's still 8 days away.

Before going on prednisone I was taking acetaminophen around the clock for about 3-4 weeks. It wasn't perfect by far, like really far, but it did help a little bit by taking the edge off my pain although only slightly. But then there's the potential of hurting my liver with too much acetaminophen.

My gastroenterologist rang me because she is very concerned but can't see her until the third week of June.

I see a new GP this Friday so I am a bit relieved for that and will go over everything with her but I know what the answer will be in that I just need to get off of steroids or the very least taper to a manageable dose to ease my digestive pain because my current treatment is not working for it.

I'm also reading other immunosuppressive medications can cause similar symptoms.

What happens if PMR is not treated? I understand it can take longer to resolve when untreated, but are there any other health consequences involved if left untreated before PMR resolves itself?

[PMRpro Ambassador in reply to perceptual63]

I had PMR undiagnosed for 5 years before starting pred - I still have it now after 13 years on pred. The 2 year story is just that - a story, Prof Mackie in Leeds called it " the 2 year myth" last week! Two family members in my childhood both almost certainly had PMR - and since in the 1950/60s it wasn't recognised or treated with pred, they had it all the rest of their lives, a long time in one case, well over 20 years!

The impression I and others have gathered over the years is that not treating it in a timely manner results in a longer/harder journey but whether that applies to all I don't know. There is a link between myofascial pain syndrome (MPS) and PMR and I wonder whether untreated PMR makes MPS worse, becoming more entrenched in the more localised muscle fascia and trigger point inflammation. That's just my theory as the MPS has become harder to clear out and manage over the years and a flare of PMR always starts with a major episode of the MPS.

The greatest problem is that it is thought that untreated PMR is about 7 times more likely to progress to GCA - and if you develop cranial GCA you are at a considerable risk of loss of sight if it affects the blood flow to the optic nerve unless high dose pred is instigated quickly (60mg/day at least for visual symptoms). Any visual loss is irreversible and once one eye has gone there is a 50/50 chance of the other going within a couple of weeks.

Is the problem a mechanical effect of pred on the GI tract? Or is it systemic? Has anyone considered depotmedrone i.m. injections? That removes the gastric aspects of pred and can be used for PMR quite well - and I do know of at least one patient with GCA who used it successfully, she couldn't tolerate oral pred either.

What other immunosuppressive drugs do you mean - both methotrexate and leflunomide have worked for some PMR patients to get to lower doses of pred - but there are obviously different versions of PMR and while they sometimes work brilliantly, sometimes they do nothing. Tocilizumab would work for PMR - but it is a problem getting funding authorised in the UK - would have to be the special process for individual patients which I know nothing about.

[perceptual63 in reply to PMRpro]

Thank you very much for your response.

Actually, I am taking oral Medrol but was completely unaware there is an injectable version until you pointed this out so I am truly grateful to now be aware of this. This does give me a glimmer of hope that I might be able to treat my PMR successfully without affecting my digestive system.

It seems that my intestines stopped working where I am terribly constipated, thus it's causing severe gallbladder and pancreatic pain. This is extremely worrisome as I only have 15 inches (38 cm) left of my large intestine due to surgery and therefore is the reason why I should never be constipated. So I blame oral Medrol as I never had this problem before taking it. This is the most pressing issue for me at this time.

Yes, the other immunosuppressive drug I was referring to was methotrexate but was unaware of leflunomide, but I assume that its adverse GI events are similar in nature to methotrexate and Medrol.

I'm in the States so I might be able to get authorized Tocilizumab through my private health insurance if it would be better for me. I have to check its profile and to see if my insurance will pay for it.

At this stage, I'm willing to try anything that doesn't affect my digestive system while also treating my PMR. But I am also trying to educate myself with the different medication options and I am grateful that you have pointed out different alternatives.

Thank you for helping me sort this out.

[PMRpro Ambassador in reply to perceptual63]

pubmed.ncbi.nlm.nih.gov/956...

There is a set of posts from someone about managing PMR this way on the forum, the member was called Admiral06

healthunlocked.com/user/Adm...

and a couple of people on the forum who used it for a time - unfortunately for one the rheumy didn;t know how to use it properly and she had problems.

I took oral medrol for a short time - I have also been on prednisolone and predisone over the years. I never had any problems with prednisolone or prednisone - Medrol was another matter and if I could have a problem with it, I did!!! It was horrendous. You could switch directly from Medrol to prednisone - it might be worth trying, can't be worse I would think!

But in the USA, you may well get funding for TCZ.

[perceptual63 in reply to PMRpro]

So maybe it's specifically Medrol (rhetorical question)? I mean, even you had issues with it.

Oh, I hope this is an easy fix with just switching from Medrol to prednisone. I'm crossing my fingers it's as simple as that.

I need to bring this up with my rheumatologist when I see her on the 7th. But maybe I should just call their office tomorrow for them to call in a new prescription for prednisone for me to possibly get relief sooner. I think I will.

I am very glad I posted and am again grateful for all your help.

[PMRpro Ambassador in reply to perceptual63]

The methyl bit of medrol is supposed to make it more antiinflammatory than plain pred - but it also means the potential adverse effects are exaggerated too. It may not work - but surely it is worth the try? It is an easy experiment.

[perceptual63 in reply to PMRpro]

I do hope so. I'll keep you updated.

[DorsetLady PMRGCAuk volunteer in reply to perceptual63]

PMRpro has given you a comprehensive answer. Like her I was undiagnosed for some time (18months in my case compared to her 5 years) ..but I had GCA not PMR…and it’s not a time either of us would want to repeat.

As stated, untreated PMR can lead to GCA -and the ramifications of that disease are well documented - and as I know, can be life changing.

I know you have to balance your various health issues, but don’t assume PMR is necessarily the easiest one..

[perceptual63 in reply to DorsetLady]

I'm trying not to make myself crazy in all this as I have a lot of health issues going on in addition to having PMR and thank you for your response in helping me to try to figure out how do I go from here.

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to perceptual63]

I know it’s a fine balancing act at times isn’t it…good luck with it.-and please remember we are always here to help….

[Thelmarina]

I have nothing useful to add but I just wanted to send you warm good wishes for your apt in June. Make your list, deep breaths, keep calm and have the relief of sharing your anxieties with a qualified listener who is also the gatekeeper for other experts. You’ll get there! 👍🏻❤️

[perceptual63 in reply to Thelmarina]

Thank you for your kind words, Thelmarina. It means a lot.

My previous GP didn't recognize PMR at all and started testing me for STI's instead, which I took great offense. So I stopped going to him and now have appt. with a new GP this Friday. I'm very much hoping this new GP will be more educated and intuitive as well as proactive compared to my previous GP. But it wasn't until I went to emergency where they recommended that I see a rheumatologist where I was finally diagnosed with PMR. And here I am.

Thanks, again.

[PMRpro Ambassador in reply to perceptual63]

How on earth did THAT come up on his radar??????

[perceptual63 in reply to PMRpro]

I have absolutely no idea what made my old GP go this route even after I said that I haven't been with someone in quite a long while. But he was persistent to test me for HIV of which I knew I didn't have but said okay to anyway. What offended me was that he tested me for syphilis and didn't ask or tell me he was going to test me for that. I didn't know about any of this until I got a copy of my labs from the lab company. I was totally floored when I saw the test performed. There was absolutely no reason to test me for syphilis, but he did, and because he did I never went back.

Hopefully my new GP will be a lot more educated. Hopefully!

[PMRpro Ambassador in reply to perceptual63]

I'm just flabbergasted!!

[perceptual63 in reply to PMRpro]

You and me both!

[PMRpro Ambassador in reply to perceptual63]

Sure he didn't need testing? I'd be really upset if a GP of mine practically accused me of that sort of thing.

[perceptual63 in reply to PMRpro]

That's why I chose not to go back to my previous GP because of where he was going with the STI testing. It was totally uncalled for and just told me he wasn't knowledgeable enough to treat me and because of that I could no longer trust him enough to him to continue to be my primary care physician and is the reason why I chose to find another GP. Hopefully for the better.

[Karenjaninaz in reply to perceptual63]

Have you ever had blood transfusions? AIDS and syphilis are transmitted that way from asymptomatic donors. So the old GP was not of base; rather sharp I would say.

[perceptual63 in reply to Karenjaninaz]

No blood transfusions and I have been tested numerous times for HIV and have always been negative.

But then there is the fact that I have been celibate for the past 19 years so the odds of me having any STI all these years and it not showing up during those years I find it highly unlikely and I specifically pointed this out to the previous GP, but he still persisted regarding the HIV test even though I balked at him testing me and he said, "Humor me." So I agreed to the HIV test but he didn't ask nor inform me he was testing me for syphilis and that is where I took issue.

In hindsight, I also took issue with him not recognizing PMR symptoms or even suggesting to refer me out to a rheumatologist. It wasn't until about a week later after seeing him that I could no longer deal with the pain and the inability to walk that I went to emergency where they recommended that I see a rheumatologist and that is when I was finally put on prednisone.

[SMH4CRNA in reply to perceptual63]

My Rheumatologist tested for chlamydia and various STIs as a differential. These were among vast other tests as well. So, not in isolation. It is interesting your GP tested only for this.

[perceptual63 in reply to SMH4CRNA]

My previous GP did test me for other rheumatic diseases but then did separate labs for STI’s . He requested permission to check for HIV but didn’t request or inform me about checking me for syphilis which is where I took offense to even though both came back negative.

My other thought was if he was checking me for STI’s then why stop there? Why not also check me for chlamydia and gonorrhea if he was so inclined to check HIV and syphilis? It didn’t make sense to me. I remember specifically saying to him that I didn’t know what this was (referring to all my severe muscle aches and my difficulty walking as it came on suddenly), and his reply was that he didn’t know either.

It wasn’t until I went to the emergency room days later to get some help of which they recommended that I see a rheumatologist where I finally got my diagnosis of PMR and put on steroids.

Taking this whole scenario into consideration is when I realized my previous GP knew nothing about PMR nor its symptoms and that’s when I decided to seek a new GP that, hopefully, is a bit more knowledgeable in this disease.

[Karenjaninaz in reply to perceptual63]

My family doctor, we had used for many years, pooh-poohed the idea that I could have PMR. I actually looked up the symptoms and suggested it to him. He did some tests but they were inadequate. He told me I should have endoscopies because I was anemic from taking Alene for the pain. He said I have fibromyalgia after pushing my arms and back. He practically whisked me out the door without any guidance at all. I self referred to a rheumatologist. I later wrote him my disappointment and changed physicians. Endoscopy found nothing.

[perceptual63 in reply to Karenjaninaz]

I would have switched physicians too. I totally get it.

[singingloud]

I’m surprised that the prednisone hasn’t calmed down your gi track. My irritable bowel settled down with its inflammation as soon as I started prednisone. Could it be the other medications? Hoping you get it sorted out soon.

[perceptual63 in reply to singingloud]

Thanks, singingloud,

Prednisone did calm down my GI track but it's way way too much where I'm really struggling with constipation and it really hurts. This is why my GI doc's hair is on fire because being constipated (considering I only have 15 inches (38 cm) left of my large intestine) should never ever happen. I have not been constipated for the last 24 years since having most of my large intestine removed due to falling off a ladder where it just stopped working afterwards. So like my GI doc, I am worried too about me being constipated.

[singingloud]

You certainly have a complicated situation. I’ll keep you in my prayers.

[Hidden]

I was rather puzzled by the fact that you were taking prednisone twice a day. I take prednisolone which is very similar, but only once a day. The steroids can cause stomach issues and I’m sure that if I took the steroids twice a day they would cause problems. This is probably of no help to you whatsoever, however it did strike me as a different way of prescribing. Probably OK, but certainly different.

[perceptual63 in reply to Hidden]

I think your reply is important. Thank you.

Perhaps switching my dosing to just once a day may make a difference. I just won't know until I try but would like to first run it past my rheumatologist before I make changes. I see her the 7th of June.

In the meantime, I just ordered a bottle of magnesium citrate to see if that can cause things to move along a lot easier. I'd rather address the constipation than come off steroids as I've only been on them for a mere 2 ½ months and from my understanding of PMR it is never resolved in that short amount of time.

[Karenjaninaz in reply to perceptual63]

I found calcium carbonate was very binding so I never take it. Even when it’s snuck into foods I notice the binding.

[perceptual63 in reply to Karenjaninaz]

I take calcium citrate but it never affects my intestinal motility. But on the other hand, Medrol's side effect of the very very slow motility of my intestines is pretty painful.

I'm in the process of speaking with my rheumatologist to see if switching to a different medication will help.