Steroids and methotrexate

[dingdong]

Hello,
This is a very specific post regarding my own personal circumstances so appreciate it may be specifically unanswerable but would appreciate any input on the general subject.
I have been on steroids for Polymyalgia for some years. My rheumatologist wants me off them so prescribed methotrexate . I had them for 6 months with no affect , in fact my Polymyalgia came back with a vengeance very quickly after stopping steroids. I endured (knowing it would be better to be steroid free) and had to just about survive on naproxin (which aren't good).
On review my Rhumi has decided to increase my methotrexate dose despite the lack of affect and the intense pain I was in.
It appears to me that the Rhumi has decided that my polymyalgia is Rheumatoid Arthritis based (due to high crp levels) and is treating it as such.
I find myself in the dilema of not knowing what is going on and getting no help or understandable advice. I can't see the point in continuing and worse, increasing a drug that is clearly not working and also that is not a good drug to be on for short and long term side effects. Worse of all, being left to suffer as I'm now told not to take naproxin anymore without a suitable pain killer replacement.
My own personal choice would be to go back on steroids as they really work for me. I realise the risks with T2 but I am of an age where it's quality not quantity I want from my life. I manage my T2 pretty well on Metformin and diet.
Any thoughts much appreciated

 

[Lally123]

Hello,
This is a very specific post regarding my own personal circumstances so appreciate it may be specifically unanswerable but would appreciate any input on the general subject.
I have been on steroids for Polymyalgia for some years. My rheumatologist wants me off them so prescribed methotrexate . I had them for 6 months with no affect , in fact my Polymyalgia came back with a vengeance very quickly after stopping steroids. I endured (knowing it would be better to be steroid free) and had to just about survive on naproxin (which aren't good).
On review my Rhumi has decided to increase my methotrexate dose despite the lack of affect and the intense pain I was in.
It appears to me that the Rhumi has decided that my polymyalgia is Rheumatoid Arthritis based (due to high crp levels) and is treating it as such.
I find myself in the dilema of not knowing what is going on and getting no help or understandable advice. I can't see the point in continuing and worse, increasing a drug that is clearly not working and also that is not a good drug to be on for short and long term side effects. Worse of all, being left to suffer as I'm now told not to take naproxin anymore without a suitable pain killer replacement.
My own personal choice would be to go back on steroids as they really work for me. I realise the risks with T2 but I am of an age where it's quality not quantity I want from my life. I manage my T2 pretty well on Metformin and diet.
Any thoughts much appreciated

Hi dingdong. I work in rheumatology and it's quite common to start people on methotrexate in PMR if someone is having trouble coming off steroid. Do you have steroid induced diabetes? Have you officially been diagnosed with RA now? If you have then there are options for treatment as quite a few patients find that methotrexate alone doesn't work and need combination therapy with another drug or sometimes two. If he has just increased your dose of methotrexate that dose increase is going to take 10-12 weeks to take effect. It may be that the dose you were on just wasn't enough. Naproxen is not recommended long term as both that and methotrexate could affect your kidneys but there are drugs like co codamol that could help. If you let your rheumy know that you are in severe pain, he could arrange for more steroids or sometimes we can do a depo injection of steroid which can help for about 5-6 weeks. I think your best course of action is to speak to your GP for different painkillers and your rheumy for more advice but there are definitely things that can be some to help you. Any steroid is likely to have an impact on your blood sugar levels but should be time limited if you only have a short course.

're the methotrexate side.effects, most patients get really worried about them so you're not unusual. As long as you go for your regular blood tests so that liver, kidneys can be monitored you should be fine. In RA the dose given is very low dose and your blood.results should be closely monitored to stop any problems in their tracks. Do you have a nurse specialist that you can talk to? You might.find that more helpful than your rheumy? Hope that helps

 

[h884]

Hi there I am in a similar position to yourself. September / October last year I developed acute inflammatory arthritis. Since then I have been on steroids & methotrexate. I am now on maximum dose of methotrexate. My Rheumatologist is very keen that I come of steroids because of the long consequences. They are now talking about starting me another drug Humira (Adalimumab). My background is a nurse so I do know the consequences of steroids and diabetes.

If you have access to a Rheumatologist Specialist Nurse I would certainly contact them for help. Also speak with your Rheumatologist express your concerns and hopefully come up with a plan

Good luck

 

[DCUKMod]

@dingdong - I don't have any personal wisdom to offer you, but thought I'd point you towards this particular thread, from a while ago. The thread OP hasn't been around for a while, but it's qiute a read.

https://www.diabetes.co.uk/forum/threads/my-life-since-discovering-lchf.66929/

Please don't think I'm suggesting this is the absolute answer to your or anyone else's dreams, but what I think it does illustrate is that sometimes unexpected things happen, and sometimes those things just happen to be fabulous.

Really good luck with your health.

 

[dingdong]

Many,many thanks for your insightful replies.
It is my understanding that the Rhumi is unable to make a definitive diagnosis of RA , which I believe is quite normal in a lot of cases with high crp only indicators.
I have had Fibromyalgia ,cervical spondylosis and osteoarthritis for many years causing a faulty autoimmune system.
I have dealt with these adequately, it was the onset of polymyalgia which took it to another level, hence the steroids.
I am unable to tolerate other pain relief such as co- codamol, gabapentin etc, so for me steroids are like fairy dust and given me a more pain free life that I haven't had for many years.
Unfortunately the Rhumi nurse left in January and they have been unable to replace them and GP always prefer me to talk to specialist in these matters.
I have read on here that transplant patients often have to rely on steroids for the rest of their lives whist also having T2.
From my experience of life, it seems that we rely on the medical services to come up with solutions when sometimes there isn't any especially when the underlying cause is unknown and therefore difficult to treat and moreover cure/
I will take your very useful advice and I will continue to research which at the end of the day is the least evil of the meds and prognosis to consider. Top of the list has to be pain relief right now.