Prednisone alternative?

[PPower]

My partner has PMR, was on prednisone for about 11 mo. when she had a bowel perforation. Her surgeon (who performed a colostomy) believes the prednisone was the cause of it. It seems her only alternative is methotrexate. She hates the idea of going on it as it seems poison to her. Her rheumatologist says that she can't just treat the pain of PMR (like with ibuprofen or medical marijuana for example) but must treat the underlying disease with a drug like methotrexate, otherwise, the PMR will get worse. Is that true? Any information would be greatly appreciated.

[PMRpro Ambassador]

It is a very rare side effect but usually at high dose over long periods. That is a very drastic outcome - I'm so sorry.

There is no real alternative to pred for PMR. MTX is used as a steroid sparer and may or may not work so even if she tries it it may not work. If it worked reliably it would be used more - and it isn't. Normally it is used alongside pred in an attempt to reduce the dose required. On the other hand - for some people it does seem to work and it is well worth a try in your partner's case I would have thought. I know a few people taking it and they have no trouble with it at all. The scare stories are mainly from people who need it for cancer - at a far higher dose. If it makes her ill - then she can stop.

I had PMR for 5 years without pred - not out of choice but because it wasn't recognised and diagnosed. Eventually I was put on pred and the relief was magical. However, although I have no desire to go back to no pred, after 7 years I am still on pred and have had a flare this spring that meant returning to 15mg from 5mg where I had been happy for nearly 2 years. I'm back to 10mg but seem stuck there. If I try to go lower I have a return of symptoms that i believe are not directly PMR but myofascial pain syndrome and sacroiliacitis. I had these 4 years ago and had them treated independently - afterwards I was able to reduce to 5mg which I hadn't managed before.

Did it get worse in that 5 years? I don't think so although in the end I had a major flare which eventually led to the PMR diagnosis and being given pred - but I suspect that that was actually due to a flare of the myofascial pain syndrome problem and had that been dealt with as effectively as it was 4 years ago I might never have gone onto pred.

The other question is - where are you? If you are in the USA you MIGHT be able to get included in a trial of Actrema for PMR. It won't be an option in the UK though.

[PPower in reply to PMRpro]

PMRpro - thanks so much for your reply. After reading it, I believe that my partner might want to move forward and try MTX and see if it works. Unfortunately, she currently has a terrible rheumatologist and is on the hunt for a new one. Appts for new patients are months away for the good ones and her current appt with a new doc is at the end of January. She takes 2 Tylenol twice a day to just keep her mobile but I doubt is good long term.

Yes, we are in the USA and I will keep Actrema in mind when we get to a new doc.

Thanks again!

[PMRpro Ambassador in reply to PPower]

I've just realised I failed to address something you said the rheumy said - she is NOT treating the underlying cause of the PMR symptoms. That is an underlying autoimmune disorder that leads to vasculitis - it is thought, but it is not certain. No-one KNOWS what causes PMR - all they can do is manage the symptoms to allow a better quality of life until the underlying autoimmune component burns out. And any decent rheumy will admit that. It adds to your assessment of her being terrible!

In other forms of vasculitis they use other chemotherapies - but no-one ever suggests them being used in GCA or PMR. The mechanism is different - how I'm not sure though. But if all that was required was suppression of the immune system - there's load of options you would think. There isn't though.

Please look at my response to pollybee as well - there is no consensus that steroids are the cause of perforated bowel. It may merely be they mask the symptoms.

[pollybee70 in reply to PMRpro]

I'm happy to hear it is rare as I had bowel cancer in 1982 and having lost a quarter of it have been fine since.

I was prescribed Omeprazole but as the pred didn't seem to cause problems, left them off, always going for the less is more route. Maybe there is a point. What do you think?

[PMRpro Ambassador in reply to pollybee70]

I don't know whether omeprazole helps with other parts of the gut. It is to reduce the production of gastric acid and the potential risk of irritation and ulcers. Other areas of the gut don't produce acid in the same way. There is a lot of dispute as to whether GCs do cause bleeding and perforation - as is reflected in this paper:

bmjopen.bmj.com/content/4/5...

They conclude the risk is increased for patients in hospital where it is more common anyway - but not for ambulatory patients.

What GCs DO do is mask the development of peritonitis and subsequent perforation - so something else may well cause it but the symptoms are so vague they are disregarded until it is too late.

[Hidden]

There is no substitute for prednisone. And personally Methotrexate is poison at least to me. Just wrote more on other post just now.

[Deb61 in reply to Hidden]

Hi in-calif and others

I need to throw in my 2cents on metho. it was terrible poison for me as well. it made me really sick and I lost most of my hair and I had not even reached max dose. However I have heard it is very helpful for some people. Hair does grow back although I am still working on it still after 6 months.

[Hidden in reply to Deb61]

Oh yeah I forgot about my hair loss. It has grown back curly somewhat. I think that was the final straw for quitting. I feel so much better.

[PPower in reply to Deb61]

Hi Deb61,

What metho dosage were you on? (Hope your hair is continuing to grow back.)

[Deb61 in reply to PPower]

Hi PPower

Sorry it took me so long to reply. I have not been feeling too well again another flare that is frustrating as back up on my pred and that always comes with its own problems as I am sure you know. I was on the lowest dose of metho and managed for maybe 7 weeks. I had thick long hair and lost two thirds of it in seven weeks. I was also feeling very sick and slept a huge amount on the metho. Doc took me off but alas my beautiful locks were gone and I looked like a cancer patient so yes wait for it.... I cut it all off. I have a great hairdresser and she made it looked not too bad. Once I quit the metho it immediately stopped falling out. That was about 6month ago and it is growing back in nicely. Hate to admit my vanity but it was a huge blow! Oh yes it has grown back EXTREMLY curly.......

[PPower in reply to Deb61]

Deb61 - Glad to hear that your hair is growing back! My partner started 6 - 2.5mg pills of metho/week. How much were you taking?

[Deb61 in reply to PPower]

Hi PPower,

I took an inject once a week .25, worked only to .5 but it was just too toxic for me. I injected myself as also now have diabetes from the pred so used to needles not a big deal for me.

[HeronNS in reply to Deb61]

Deb, I'm sorry you've been under the weather, hope your improvement continues. Cutting your hair at that time was the right thing to do. A friend of mine has inflammatory bowel disease and at one point looked literally like death warmed over. She still had her hair but it was thin and in bad condition. She was very unhappy about it. So I suggested that because her hair held bad memories, sickness, hospitalization, etc., she should get it cut short and restyled, and then the new hair would grow back healthier and without carrying the bad memories. This is what she did and she looked ever so much better, and now her hair is as long and pretty as ever.

[TooSore]

PPower, I'm in the U.S. As well. I had good luck calling a major hospital system (Yale) and asking for an appointment. I was in the office in 3 weeks. If one of the current doctors makes the referral you might get in sooner too. I can't comment on the methotrexate but I can say that prediagnosis I found taking Aleve (naproxen ) more helpful than Tylenol or ibuprofen . It does go after your stomach over time though and did not do all that prednisone could but it helped me survive until I got to the doctor. Good luck.

[Admiral06]

PPower, was your partner taking nsaids (Advil, Alieve, aspirin) for pain in addition to the pred? These products can perforate the intestines in a healthy person, and when the pred further thins the intestinal walls this exacerbates the problem.

[PPower in reply to Admiral06]

Well, she was taking ibuprofen a year before the pred but once on prednisone she didn't need anything else as it acted like a miracle drug and she immediately got her life back. Until the perforation...

[Admiral06]

A very rare and unfortunate side effect!