I've just been diagnosed with PMR today, I can't take steroids as I'm type 2 diabetic, is there any other way that can relieve PMR ?
Could you give us a bit more info? I'm T2 diabetic, but I've been taking steroids for 15 years now, unfortunately they are still the only effective help for PMR.
Hello spudulike, I was not aware that having type 2 diabetes meant that you could not take preds. I understood that you can take preds but you must watch your diet far more closely to ensure your blood readings stay low.
You say that you were diagnosed today so I assume you have been at the dr's? What have they done given you the diagniosis and sent you home with no medication? Please let us know. Regards, tina
There are plenty of people with Type 2 diabetes who take pred for PMR - control of BS is a bit more complicated but it does work and cutting carbs drastically does help a lot!
There is no other medication that manages PMR. I spent 5 years with PMR and no pred as I wasn't diagnosed. I was able to keep reasonably mobile for most of it but when I had a major flare 5 years in I couldn't move. The previous 5 years I had never been out of pain and it was really not a pleasant experience.
Hi, I am so sorry you have been diagnosed with PMR, who on earth told you that you cannot take steroids if you have type 2 diabetes? You just have to be careful. Without steroids PMR can be incredibly painful and not recommended.
Hi,
Have you tried prescription anti inflammatory meds? K7
Hi, I discovered and was diaganosed with T2 diabetes just prior to my diagnosis of PMR ! (T2 IN Dec 15 / PMR in Feb 16)
Since then I have been taking Metaphormin and Sitagliptin to keep the Pred ' s at bay. I have had to review my whole diet for both conditions but so far couping well and keeping my B'S well within the guidelines.
So far working well as can be expected! Good Luck
Prescription anti-inflammatory meds, will not touch PMR, only thing that does is prednislone.
Thankyou for alll your replies.
Ive been in pain for a while and they have been taking lots of blood tests to find out what was wrong. I had a bad day again and saw a Dr that wasnt my usual one, she said i could have PMR and took more tests, she said that if it is steriods is what relives the pain but as im type 2 (medicated) this is not recommended. A week later i phoned up and the receptionist said my blodd was fine, i thougt this strange as i was still in pain, booked an appointment and got my usual Doc, he confirmed PMR, that was on Friday. He also said the same that sterionds are not recommended as it raises your blood sugar and causes alot of other side effects. Sice then i have read a bit more and now i dont know what to do. Im off work yet again today as im in pain. From what ive read its worse in the morning, yes it is, but it also is painfull throughout the day. To be honest im feeling pretty down today.
Your GP is wrong. Yes you have Type 2 Diabetes, but you can take prednisolone and then watch your diet and talk to your diabetic nurse.
We had the Lead Dietician at a support group meeting of PMR and GCA patients some of who have Type 1 and Type 2 Diabetes and are taking prednisoone. The Lady has written an extremely informative article on Diabetes - you can find this article on the pmr gca northeast website in the summer newsletter. One of our members has had Type 2 diabetes for over 10 years and PMR for 3 years.
My usual Doc sent me for a chest xray (which ive now done) and has refered me to a rheumatoid clinic, so im guessing i will get help to deal with it there
Thankyou so much for this info, ive just had a quick look at it and so informative, i live in the south east area and noticed there are support groups. Ive just got an appointment with my diabetic nurse today and going to discuss with her, maybe then i will know what to do next, fingers crossed xxx
I was unable to take preds due to my medical history. I was prescribed methotrexate. It worked for me. I keep reading that preds are the only option for PMR and that if methotrexate works it must have been because I didn't have PMR in the first place. My consultant still has no doubt about the original diagnosis.
It so happens that I know someone who has PMR who has also been prescribed methotrexate. It has worked for him too.
I really cannot comment further. Seems to me you are in the hands of your consultant.
Eileen, you repeat again your assertion that no other medication manages PMR (see my other post on this thread) My Consultant reconfirmed my PMR diagnosis after I questioned him about this. It's taken about 18 months for me to return to normal while taking methotrexate. To be honest I'm not really bothered what caused my problems but the fact is for some time I was crippled by my condition and in considerable pain so I am happy to assume that the use of methotrexate must have had some effect! And it might work for other people in a similar situation.
Just to add to my previous post, I studied this:
It includes a reference to methotrexate as a disease modifying drug. It refers to it in the context of being taken alongside preds rather than as an alternative. In my case it was used exclusively and presumably was the cause of my reduced inflammation readings and subsequent pain relief.
I'm not qualified to discuss this any further!
If you are in the southeast - where are you (-ish)? Maybe we can direct you to a suitable rheumatologist with appropriate experience.
You need a good PMR-experienced rheumatologist to manage you because it is really a case where the average GP is out of his depth - no pred isn't ideal when you are diabetic, but there isn't a choice sometimes. There are a couple of particularly good PMR people south of London - and you can choose who your first referral is to. It's worth a bit of a hike to get a good doctor!
I also believe that MTX does nothing for PMR, I took it for 2 years and got nowhere except a giant flare-up. I agree that there are several rheumatic type conditions where MTX does help, but they are not PMR.
I know a man somewhat over 70 years old, who also was diagnosed with PMR after diabetes. He does take pred, and hasn't been doing very well with his reductions (doesn't really look after himself, doesn't exercise) but nevertheless is at around 8 mg which isn't bad. He also had to get a pacemaker. I think he's had PMR for about two or three years. Recently he was enrolled in a program at a health clinic where he will be carefully monitored and start exercising.
This isn't entering a discussion - it is answering your quote.
All the major guidelines and texts about management of PMR and GCA emphasise that "corticosteroids are the mainstay of management". You can mess about trying other drugs with patients who have PMR - if it doesn't work the worst they will have is a lot more pain than they need to - but to do so with a patient with GCA is unethical. The most feared consequence of GCA is irreversible blindness - and to date the only drug that is known to reliably prevent that is high dose corticosteroids. It is possile that this time next year we won't be saying that - a trial is just in its closing stages that MAY show that tocilizumab can be used to induce remission with far less pred. We don't know yet, the results are not published. The rumours are it looks good. But it doesn't replace pred - pred will still be used because it is known to work.
And it won't be on offer for PMR - I have little doubt that it would work there too if it works for GCA - but the horrible reality is that it is VERY expensive, $17K a year and it is not yet known whether it will work with just a few doses to obtain remission or whether it will have to be given on an on-going basis, just like pred, until the autoimmune cause of GCA burns out, just like pred. In fact, it is quite unlikely it will be given a blanket approval for GCA - pred works, pred is cheap as chips, the NHS is almost bankrupt because of expensive drugs. Tocilizumab is also not sweeties when it comes to side-effects - and they will be publicised in time as it is used more and more and lots of patients start showing the downsides. It's only once a drug is in widespread use that they see the real side effects rates.
In this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find links to the "2015 Guidelines for the Management of PMR", compiled by the top experts in the world, to an article by Sarah Mackie on the Scottish website and a paper for GPs written by Quick and Kirwan about their approach to managing PMR and GCA under the heading "Bristol paper". There are many others I could quote if I took an hour or two. Not one of them suggests methotrexate for anything other than possibly as a steroid sparer - it potentiates the action of pred in some patients, but not all - and every single one discusses pred as the primary management option.
There have been clinical studies using mtx alongside pred - there is no conclusive evidence it results in a clear reduction in dose over a longer time and no evidence it results in a reduction in steroid side effects. That means it adds in potential side effects of its own and may not work. There is not one single study where mtx has been used on its own for PMR - I don't think I have even seen a case report to that effect though no doubt there is one somewhere.
If someone wants to try it and it doesn't make them ill - that is fair enough and that is what the most recent guidelines say, it is a decision that should be made jointly between the patient and the doctor. mtx is a DMARD, a Disease Modifying Anti-Rheumatic Drug. The disease it modifies is RA, it works in some way to reduce the damage done to the joints which is the hallmark of RA and the most feared aspect of it beyond the pain. There is no joint destruction in PMR, PMR is different from RA, and while for some people it may help, it doesn't reliably. If it did then they would use it far more than they do. Many doctors in Germany do I think - but it is by no means universal.
The more medications you put a patient on to the bigger the risks of interactions and problems with compliance. If the only drug you take is pred for PMR then it could be a reasonable ask to say, why not try mtx too? But the reality is that there is almost no-one on this forum on just pred - I was until atrial fibrillation raised its head but now I take 5 different drugs spread over 3 times a day. I have no desire to add another 2 to the mix - mtx and folate - even if the mtx is just once a week. On its own, fair enough, mixed with the rest? No thank you.
Eileen
Issued 13 July 2016
NHS England has carefully reviewed the evidence to treat GCA with tocilizumab.
We have concluded that there is not enough evidence to make the treatment available at this time.