Thank you

[animalactivist]

To all that have replied to my post Thank you but I sit feel as confused as ever. wish someone could out rightly be able to advise or say which would be best. steroids or methotrexate. Bearing in mind I have a mental health problem and left my inflammation untreated for 4 years.

[GOOD_GRIEF]

I know you want someone who could tell you what to do, but no one can. The most effective drug to treat PMR is prednisone.

Only you can know whether you can tolerate any level of pred to treat your PMR without causing a problem with your bi-polar condition. And you can only do that by trying it.

Maybe, for you, the way to try it is to start with a low dose - maybe 10 mg or less - and see how it goes. If it's not bothering you, build up to a dose that treats your PMR symptoms without triggering your bi-polar symptoms. If you're only trying it out for a week or less, you should be able to taper off or completely stop very quickly if you have to.

MTX doesn't get at the root of the PMR inflammation. Pred does. MTX in PMR treatment can help some people reduce their pred dose, but won't replace it completely. The PMR inflammation already has to be in a state of decline for it to have much chance of working.

The only other suggestion I have it to try Actemra, which is a different class of drug altogether, and may be effective in treating PMR.

I'm really sorry you're having to deal with this. Either condition, on it's own, really sucks. Having them both is sucks x 2.

We're in your corner, though. You can get through this.

[HeronNS]

Treatment for PMR pain involves a relatively low dose of prednisone which may not have a significant effect on your mood disorder. I think the problems some people have usually occur at the much higher doses used for GCA. Many of us get quite elated in early days on pred, even at low dose, because we feel so much better when the pain is relieved! We can still get some physical side effects even at 15 mg. Is there any chance you could be under observation for the first few days you take prednisone?

Methotrexate simply won't work on its own for PMR and as PMRpro said on your earlier thread it isn't even reliable as a steroid sparer to enable you to taper more quickly to a lower dose.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry but we can't tell you what is the best drug for you, nor should we, we are not medical professions. Your Rheumatologist has advised you, and we have commented on that - mostly in agreement with her.

We do not know you and your other medical issues, which obviously have to be considered, but at the end of the day it's a decision that has to be made between YOU and your Medical team.

Whatever you decide I'm sure we all wish you the best.

[PMRpro Ambassador]

No-one can give you a straight answer, especially here as none of us is medically qualified but, even if we were, online diagnosis is a no-no. You need to discuss it with a rheumatologist AND a psychiatrist who is conversant with the use of corticosteroids in mental health patients.

I thought I was fairly clear in suggesting you asked about Actemra/tocilizumab. It has been used in patients with mental health problems:

ncbi.nlm.nih.gov/pubmed/272...

bipolarnews.org/?tag=tocili...

In the article in Bipolar News tocilizumab was just one of the biologics tried but is probably the only one that would work for PMR.

[Jemsea]

Hi

I do sympathise with your condition, my husband was diagnosed manic depressive over 30 years ago, and he would certainly never take prednisolone without first consulting his GP, pharmacist or psychiatrist. It does actually say in the instruction leaflet for pred. that if you suffer bi-polar disorder or any other mental issues, you must first consult your pharmacist or doctor.

My husband was prescribed some for gout about a year ago by his kidney consultant to take for one week. He never took them. My husband was on lithium for over 30 years - is no longer - it poisoned his kidneys, although stabilised his mood swings. I asked him if he thought you should take pred and he said certainly not without qualified say,so.

I do hope you manage to get the right answer and I understand perfectly how difficult this must be for you, and I know how the mood swings could go either one way or the other. Also if you are on lithium, you must find out if you should take pred. On the other hand, having PMR itself can plunge one into depression, even though one isn't bi-polar. You really must, as Dorset Lady and PMRpro say, get the right people to advise you and do it as soon as you can.

[PMRpro Ambassador in reply to Jemsea]

But in most countries you can't GET corticosteroids without it being prescribed by a doctor.

[Jemsea in reply to PMRpro]

My O.H.'s Kidney Consultant prescribed his pred. for his gout. He is under the care one of the top kidney consultants in the S.E.

[SheffieldJane]

We are not doctors. You should be putting your worries to your doctors forcefully, perhaps take a friend or advocate. Nothing relieves PMR except Prednisalone, you would need to be supported very closely. Nobody here can tell you what to do, everything carries a risk. My hope is that you will be fine on a PMR dose of Prednisalone.

[Marilyn1959]

Hi Animalactivist. My husband was put on a high dose of steroid for early signs of rejection when he had a liver transplant. He had steroid psychosis as a result or so we thought. Though his transplant specialist told me to never allow my hubby to take steroids again!

Four years post transplant he was diagnosed bi polar. It is possible that the bi polar was undiagnosed at the time of the transplant.

His bi polar is stabilised and more recently he was successfully on a low dose of steroids short term. However he was very, very closely monitored by myself, his GP and his specialist.

So everyone is different and even individual circumstances change. I therefore agree emphatically with the others who have responded...only you and your physician can together decide how to progress your treatment.

I do hope that you find a way forward that suits your circumstances and needs.

Best wishes.

[Omanain]

I cannot give you any advice at all. My granddaughter is bipolar so I am aware of some of the difficulties you face. Just wanted you to know I am rooting for you at this difficult time.

By the way did you ask about Actemra as PMRpro suggests? Her research is always very thorough and can be relied on.

Kate x

[Nagswoman]

Preds will make you feel better and will get rid of the inflammation but they will not kill the disease.

MTX? I started on 15mg 6 weeks, after starting the preds in June 2016, and went up to 17.5 then 20mg every Monday, which I have been on since Oct 16. I don't know if MTX has helped me in any way but it was supposed to help me get off the steroids. I have 10mg folic acid on Fridays as MTX kills folic acid. MTX, in large doses is a cancer drug, hence the folic acid to counter hair loss, and we have to handle it carefully. It is a controlled drug. I got down to 5mg preds on 1st Jan this year, from 40mg when I first took them in June 2016. This year, I am struggling to taper below 5mg. Up and down. Up and down. Very slowly. I got to 3.5mg on even days and 4mg on odds in August but all of the PMR pain came back, so I went back to 5mg for 4 weeks. 4.5mg from 1st Sept. Not all of the pain has gone so maye I will reduce only every other month. I was told that, as I had been ill for so long, 5 years, before diagnosis, I may be on preds for life. 😀

[PMRpro Ambassador in reply to Nagswoman]

" I was told that, as I had been ill for so long, 5 years, before diagnosis, I may be on preds for life"

Did your doctor give any backing for that statement - or is it just his experience? I'm interested as I had had PMR for 5 years undiagnosed - despite my best efforts!

[Nagswoman in reply to PMRpro]

Experience I expect. It all depends if my adrenal glands wake up again, properly.