PMR is back yet again

Hi all I'm new on this post, have had PMR for 2 years now, have tried twice now to lower pedi and come off of this medication, 2nd time stoped medications February 2017 and then started feeling really tired, would come home from work and then sleep, and now guess what? Has come back with a vengeance, saw specialist 2days ago back on the steroids, and has taken more blood samples, thought this illness would go after 2yrs but no its back.

43 Replies

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  • No, sorry to disappoint you: about a quarter of patients are able to get off pred in 2 years or less. About half need pred for 4 to 6 years, the rest of us take longer than that. An Italian study found about a third of patients were still on pred after 6 years - which I suppose includes the really long term people and some of the middle group.

    It probably had never gone away altogether and it is quite possible that had you stayed on even just 1mg it wouldn't have flared. That has happened to several people I know. You will probably be able to reduce to well below 10mg quite easily though. Good luck.

  • PMRpro, is the Italian study online? If so, could you please post the title?

  • Thank You

  • Has anyone with PMR actually had to give up work with this illness?

  • I was off work for 5 months and have just started a phased return to see if I can cope. What will be will be, but I do enjoy my job and have missed all my colleagues. I work in criminal justice. Have had to give up my athletic coaching and massage therapy work I used to do in my spare time though, which I miss terribly. Will be watching the London marathon tomorrow instead of running it this year :-(

  • Hi Janet. That is so hard for you. At least I had been retired for many years before pmr struck. I had still been a keen hillwalker and giving that up was heartbreaking. You have had a long spell off work and have had to give up all the things you love. I feel for you and hope you will be in remission soon.

    Liz.

  • Thank you Liz. Had a day out today with members of my running club, watching them hand out water to the 40,000 runners at the London marathon. I took a chair and cheered very loudly and enjoyed my day. "Nothing wrong with your lungs!" they commented :-) One day I'll run again and will raise funds for PMR charity! x

  • Well said and so pleased you managed to be involved. 😊😊😊. You will run again. I do little walks on the flat and am thankful.

    Love Liz.

  • I had to give up full time work and now just work a few hours a day and always leave space for my afternoon rest without which I am useless the next day!

  • Hi Suesie

    Yes, I took early Retirement as I could not get the steroids below 11mg, I was always exhausted by 2pm everyday as the mornings work used up all my energy. I tried shorter days but ended up worse off as I was trying to do the same work in less hours!

    I always thought I'd dread not working but I adapted fine & love being able to suit myself & give my body chance to recover.

    I often wonder if I'd gone off sick at the start instead of struggling in each day, wether the PMR wouldn't have got so bad or I'd have had so many flares? Who Knows?

    Mrs N x

  • Yes that's exactly what I have done, working 20hrs a day but trying to do full time work, I have a sit down job but work with a microscope and tweezers, very small components, it is getting very hard with my hands, but unfortunately I have another 2 and a half years to go, hubby is already retired so still need my little bit of money.

  • You are lucky you can still use a tweezers - I couldn't.

  • I started by changing my work schedule.... Then I reduced my hours..... Then k started taking sick time.... Now I am retiring the end of the next school year....3 years early from a job I love. Just can't do the work as well and send unfair to continue. Hope these choices will help me recover and lower dose. Can't seem to get below 12,5.

  • There are people on all the forums who have either had to give up work, retire early or change jobs. There are probably relatively more with GCA who have had to stop working.

    Had I had a "proper job" I'd have had to give up - but I was a freelance translator. I didn't have to commute anywhere, I couldn't have, all I had to do was fall out of bed and crawl to the computer...

  • Suesie54. I had to stop work, as a live-in carer, age 58, due to GCA, and have not been able to return either to that, or any other job. Thinking that you may be well in 2 years, is setting yourself up for disappointment. I know. Have been on Pred for 12 years, BUT am pain-free and tapering to 2 mg from 3 mg. There IS light at the end of the tunnel. Keep going.

    karools16

  • Thank you for your reply, and the only thing I think people want is to be pain free, and if that means steroids then so be it.

  • I could not have worked by the time it really took hold and even now after 2.75 years on steroids I know that I could not be reliable and that I would not have had the reasonably easy ride if Id have had the stress of work. I retired.

  • Hi,

    As PMRpro says it probably never went away.

    Unfortunately 2 years is a figure bandied about by many doctors, but it really should be regarded as a minimum time, 3-4 years is much more normal, and for many people it's a lot longer.

    I think you have to approach PMR or GCA with the understanding that you're not sure how long it's going to last, difficult though that may be.

    If you have in your mind an end date you are only putting yourself under pressure to be off the Pred by then.

    That's not how it works, you need the Pred as long as the PMR is active - that could be 2 years, 4 years or longer!

    And yes people have had to give up their jobs with PMR, but you should discuss with your HR department, maybe you can adjust your job to accommodate your illness.

    Good luck.

  • Out of sheer curiosity, if I ever crawl down to a very small dose of pred, does the skin return to normalish?

  • Yes it does!

    But even now, after being off Pred for 7 months mine still is a bit longer in repairing than it was pre-Pred days. Mind that could be down to age as well - oh dear, never mind!

    One good thing, I don't seem to bruise as much - small consolations 😉

  • Thanks for the encouragement DL. I seem to have aged skin-wise and have put that mainly down to the pred but perhaps you're right... maybe it's a smattering of age!

  • Really sorry for you but also a bit relieved. I have had PMR for two years and feel as if I'm on a roller coaster. I got down to 3mg but it all came whanging back, up to 15mg, now down to 8mg. I did think the need to sleep was all down to my age, just turned 70, (with other health problems)but maybe it's just the way it goes at least I don't have a job to worry about

  • I have been down to 3mgs 3 times now and last time my levels were sky high I don't want to try anymore and stay on 5mgs for life now as I want a good quality of life !

  • Mine has never gone I've only ever got down to 4 mg and it comes back with vengeance ! I'm back on 5mg and I want to stay on this as a maintanance dose now permanently as the last time I went down to 3mg my levels were higher than when I was diagnosed ! Xx

  • I had exactly the same experience last year when I had a 'flare' at 5mg and my CRP was higher than when originally diagnosed. At that point my Rheumy said that it would be unlikely that I would ever get below 5mg. I have been tapering from 30mg and am currently taking 7.5mg Prednisolone daily and 20mg Methotrexate weekly.

    I saw my Rheumy in January and he said my bloods were looking good. His subsequent letter said I was in remission. I saw him again last week and was supposed to continue to taper taking 7.5mg one day / 5mg next.

    Instead I will remain on 7.5mg for 4 months and he expects me to be at zero in a year's time. Whilst I would be delighted if this was the case, I shall be taking one day at a time as I am due to have a total knee replacement within the next four months and have an ENT appointment for chronic rhinosinusitis.

  • Hi,

    Well said. Some Rheumys seem to forget that life has a nasty habit of disrupting their reduction plans!

    No point in try to reduce when you have other things on the horizon that are likely to cause that reduction to falter.

    Once you get below 5mg there is very little in the side effect line, and most of us, as we mature. (In body, if not mind!) take other tablets long term (to control HBP in my case) and the doctors don't seem to get in a tizzy about them like they do with Pred! Some of them have some unpleasant side effects as well.

  • Hello DL, just wondering whether, if I ever crawl down to a very low dose, my skin will return to normalish?

  • Yep, just answered this further up the list of replies

  • Hello Daw50 - has your surgeon agreed to operate with you being on steroids, please? My surgeons are saying I must be at 5mg before thry will operate, even though my rheumatologist says they could do it at 8mg :(

  • Try shopping around - your rheumy is right and I know people who have had a hip replacement on 10mg. Some people could never get down to 5mg - they still need surgery.

  • Thanks, PMRpro I still have some way to get down to 10mg, and I hope to work on my surgeon (he already replaced one hip and did a fantastic job, so really hope to stick with him if I possible) by knowing about people having successful surgery whilst on more sterouds than they favour. Also I thought it would be better logistically to stay local, and the local surgeons all seem to play by the same rules. Maybe I should look further afield.... Not easy as currently not able to drive. A thought: what would happen if they had no option but to operate - if the bone actually broke? There must be a way of mitigating the dangers, surely?

  • "His subsequent letter said I was in remission"

    There is no way he can know - except you ARE in drug-induced remission if you class remission as "no symptoms". The only way to know you are in full remission is to stop the pred and no symptoms return. Nothing else...

  • My rheum doc's language is to say my PMR appears to be in a "quiet phase." Which is what she said recently. The way she talks about it I always picture a monster that takes a nap for a while or perhaps even goes into hibernation --- but it returns when it pleases.

  • Yes - that fits. If you happen to have a long period of "quiet" when you are at a lowish dose then you might even get off altogether - and then it wakes up again within weeks. Happens quite a lot unfortunately.

    I have a blogging friend who calls her rheumatoid arthritis a dragon - since it burns.

  • Two things that may help.

    Check out two things that may help you - LDN and pulsed electro magnetic therapy

    If you google both you will find all the info you need. The electro magnetic therapy mat may reduce your pain tremendously

    I am in the States but you should have the same.

  • LDN is not easily available in the UK - it would require a doctor to agree to provide a private prescription - which usually would also require a private consultation.

    Buying a mat for pulsed electromagnetic therapy at home costs somewhere northwards of £2K. The only therapists I can find suggest 2 sessions a week at £15- to £25 a throw. Since PMR is a chronic illness I assume it would be required long term.

    Not dismissing it, there is evidence to show it does help in acute injury.

  • Some insurances cover bemer therapy but I understand things are different in the U.K. It is especially good for any kind of pain and fatigue.

    If you can find a doctor somewhere

    doesnt have to be the U.K. to Fax you a prescription for LDN and if you have a compounding pharmacy they can fill it If not there is a pharmacy in Israel that will send it without a prescription. Until I found a doctor here I ordered from them but it takes forever to get. Or do you have holistic doctors where you are?

  • I think getting medicines over the internet without knowing exactly what you are actually getting is playing with fire, particularly if they are prescription products.

  • To add to piglette's very pertinent comment - and in some cases is illegal.

    You can only get prescriptions in the UK from your GP or the hospital specialist. LDN for PMR is not approved, you would extremely unlikely to get it. Any other doctor would have to be paid for either via private insurance or out of pocket. They don't come cheap - and very few of us would have private insurance - but even that doesn't work like the USA. They do not cover chronic illness - they will discontinue cover after a relatively short time.

  • Just stopped my steroids now for a week after being on 1mg every other day for a while now, was diagnosed nearly 2 years ago now...so far feel ok hands ache a little bit but I'm perserveering with it...I'm praying it doesn't come back don't want to go through all the pain again! Good luck

  • My doctor said right at the beginning that some of her patients keep a supply of 1 mg just in case they need an occasional dose. At the time I didn't think I'd ever be in that position, but now I understand what she was saying and think she is very wise. I believe the hope is that this need diminishes and eventually you truly never need to take even the occasional 1 mg again.

  • Have now been signed off of work for two weeks as steroids have not kicked in as fast as it did last year, have some funny looks in work, think it's because it's not like a broken bone where you can see the cast, but hey ho, I know I am not well.

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