Fed up

Hi Sue, Sorry to hear you not feeling to well. I was diagnosed with Fybromyalgia in 2010 and put onloads of different drugs and ended up on Gabapentin & Amitriptyline up to 170mg. Then in 2012 was told l had Polymyalgia as well & was put on Steriods, then a few months ago was told l had Steriod induced Diabetes. Have'nt been able to work for 3yrs. Being diagnosed with these illnesses has ruined my life. I was an M.D in a company for over 20yrs, had my own beauty salon at the age of 20yrs old, have worked since I was 15yrs of age , car'nt get any benefits because of my husbands earnings, but why should I be grouped with him when I've always earned my own money, so I also have all the stress of money issues. I have been bedridden the past 3weeks with the illnesses & thought why am I taking all these drugs & still being ill. So spoke to my Dr & decided to reduce the Steriods from 15mg to 5mg because I' sick of the weight gain with all the drugs, Have come off the Gabapentin & changed to Tegretol but they don't seem to be helping. With stopping the Amitriptyline my sleep patten is all to pt so Dr put me on Zopiclone 7.5mg only took them for a couple of nights as I didn't like the way they made me feel, have been trying one-a-night Nytol but they hav'nt helped. Coming off these drugs has given me very bad cold turkey, only problem now is it's 3am & have been to bed but had to get up as tossing & turning & my husband telling to keep still as I'm keeping him awake, so I will sleep most of the day tomorrow with being up all night, also I get very bad pain/tingley/itchy feeling in my feet & hands which my Dr has given me Tegretol for which is for nerve pain as the Gabapentin was but having no luck with them, so if anyone can help me with that one. When I started with th Fybro I was advised to go on Fluoxetine as people tend to get very down with Fybro & Polymyalgia. Hope you start feeling better soon x

Hi Sue! So sorry to hear you are having a hard time. Sorry too I haven't replied earlier - but I haven't been on the forum for a few days and new threads don't pop up in the email notifications!

If it is any consolation your last 18 months almost mirrors mine! It started in March with my achilles tendon becoming inflamed (because I was given the wrong antibiotic which interacts with pred) and my back went into total spasm as a result about the end of April. I went into hospital for 2 days to get that sorted - and ended up there for 3 weeks as I reacted to the i.v. valium used for the muscle problems and had tachycardia (fast heart rate) with a pulse of 230 and atrial fibrillation. I came out still on crutches and a with a suitcase of drugs. One was a statin - and within a week I could barely walk at all, 50 yds from the car to the lift in the hospital was it. Even standing was beyond me. I stopped the statin and that improved slowly but noticeably. The next thing was a return of trochanteric bursitis far worse than it had ever been before - and that made rehab after the May problems next to impossible: if I walked more than a few hundred yards I was in agony as opposed to being merely in pain!

I have had PMR altogether for 9 years, the first 5 years not on pred as it wasn't recognised - I was "too young and your bloods are fine". Only when it got really bad in Jan 2009 was I eventually given pred and it wa like a miracle but a couple of years ago I had possible GCA symptoms and was back up to 15mg and, because I had moved here to Italy, had to be switched from prednisolone to methyl prednisolone. Until then I had not put on weight, it had moved to around my waist but it wasn't too bad. With the Medrol I really became cushingoid like you and I had a short period of very high dose medrol whilst in hospital.

Why have I told you all this? Not because I want to say "I was worse than you" but because in August last year my GP switched the form of pred again, to a form called Lodotra which is the only alternative to Medrol here. Since then I have lost 26 lbs in weight, I'm overweight but have a waist back, the fat face and dowagers hump have disappeared and I feel great. I have had cortisone injections for the trochanteric bursitis and also a LOT of sessions with the pain clinic here to deal with the spasmed muscles in my back - and they contributed to the bursitis pain. I now have no pain, can now walk for an hour without being desperate for a rest, after a good rest I can do the same again. Last Christmas I struggled to do 400 yds - this year I'm waiting for the ski season to start! There is light at the end of the tunnel - you really won't always feel like you do now! By last Christmas I was despairing, I didn't feel much better in the spring - now is a whole new ballgame.

You were started on a very high dose for PMR - unless they suspected there might be some GCA going on. It is known that patients started on a high dose do struggle later and that is why a starting dose of 15mg is recommended for PMR. That will have contributed to the weight gain (although it ISN'T inevitable if you are very strict about diet).

I don't get why your rheumy has suggested to you that azathioprine will "get you off the steroids" - it does not and cannot replace the steroids in dealing with the PMR symptoms, at best it will allow a lower dose of steroids to achieve the same effect and, in fact, the top people in the field are now actually saying they have realised it doesn't achieve as much as they originally thought it did. It is possible that the patients for whom methotrexate and azathioprine worked were some of the patients who are wrongly diagnosed as having PMR rather than late onset rheumatoid arthritis which can be very similar in the way it appears.

A drug where they have had some success in patients with other problems that mean they need to get off pred is LEFLUNOMIDE. A trial was done by the Southend group under Dasgupta with 23 patients. One dropped out and 1 didn't respond but the rest went into remission. If I were you I would ask your rheumy about that - I believe there is a larger scale trial underway at present.

I would also ask for cortisone injections for the trochanteric bursitis. I had one lot in July last year and it made a big difference but didn't get rid of it altogether. The second pair of shots in the autumn did after another few weeks. The injections aren't into the joint so DON'T have to be done in hospital. They are done at the point which hurts most to touch - they prod until you tell them where it hurts most. I know the UK is very reticent about dealing with pain and I am very thankful I live where I do - I've had a lot of needles over the last year or so but it has achieved a lot.

Have you visited the PMR forum hosted on forumup? A link is given at the top of this forum in one of the pinned posts. Otherwise there is a link from the PMR and GCA UK Northeast support group site, where you will also find lots of advice and success stories etc (google it). Three or four of us over there have lost a lot of weight over the last year in different ways and we have been talking about it - you might find it interesting and helpful. And 3 or 4 of us have also had terrible bursitis problems - and they have resolved, also possibly helpful to you.

But the 57 feeling 87 - yup, know exactly how you feel! I used to sit and cry.

Eileen

Thank you so much Eileen for your reply. Although I'm sorry you have had pmr and all that goes with it for a long time, it helps to hear I'm not on my own with these various symptoms. Each time something else pops up I think " oh no I hope this isn 't another problem connected to the pmr and most of the time it is lol. I'm

So glad things have improved for you an least it does show there is light at the end of the tunnel as you say. I was having such a down day when I wrote that, but feeling much better in myself, eventhough I can't stand or walk far at the moment, I know it will improve soon.

I will ask my rheum re: the injections. I have had them before I'm my left hip and shoulder joint and it worked for about 3 weeks before the pain came back, but it did help.

Thanks again.

Maybe I was just lucky - I often hear people in the UK denigrating cortisone jabs but I had one years ago in Germany for a knee problem that was magic and then again here. As I say - here it was NOT into the joint but on the outer aspect of my thigh and worked a dream, although it took 2 sessions a few months apart. They were done here because when you are on pred you shouldn't use NSAIDs and the other medication I'm on makes any other painkillers inadvisable over the long term.

Do come over and investigate the other forum - it may not be for you but we encourage people to come and have a whinge when they feel down or ill and as there are nightbirds and members throughout the world there is usually someone around 24/7 (providing they aren't working on the site which makes it a bit dodgy at the moment!) who can offer a virtual hug. There is almost always someone who has been there and come out the other side and we have a good old laugh and gossip!

Eileen

Thanks again Eileen, I will try the other forums. It really isnt like me to whinge but was feeling particularly low that evening.

Sue

With any chronic illness there comes a point in everyone's life where you feel down - made worse when it is one where you don't look ill and your family and friends just don't understand. Most of the people on the forums have been where you are - there's the odd one or two who come on here to tell us we are doing the wrong thing by not buying their supplement or having faith or exercising enough (!) and a few months ago someone claiming to be a rheumatologist told us if you are still on pred after 2 years you haven't got PMR - by definition! He was soon told he was in the wrong place until he'd done some up-to-date reading (with references of course)!

Shout and scream as much as you like here - it helps when it's shared even if we can't give you a big real hug!

Eileen

Hi Eileen,

Re new threads don't get emailed - we have the "Follow this topic" function now. On https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708 if you click the button, any time a new discussion is added to the PMR topic you will get an email.

Also, you can now post links from within the site and they will not get reported so if you want to refer users to the pinned post here https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708 just add the link if easier.

Regards,

Alan

Thankyou very much Alan - that will be so useful!

Hope life is treating you better these days - certainly the site is easier to use these days.

regards, Eileen