I was diagnosed with this horrible condition yesterday & started on pred as you all are. The early signs of pain reduction are amazing & today I have even walked my dogs around the park (not been able to do this for a couple of weeks now).
My question is about the pred & how soon they look at reducing the dose & by how much at a time? I have been started on 20mg a day & a check up with my doctor next week, I'd just like to know what to expect & get advice from you lovely knowledgable people.
Thank you x
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PamOakes
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Hi pmr beginner! Welcome to the club! Now it mean's I am not the newbie anymore as I was diagnosed mid december 2014. I do not have that much experience but I can say that I was started on 15mgs pred for 4 weeks by my GP and then was told to reduce to 12.5mgs but that only lasted 3 days until the pain came back with a vengence. I then had to go back up to 15 mgs for another 4 weeks. I am now going to reduce by 1 mg every 4 weeks if possible so currently on 14mgs . So far so good but now that I am back at work after 10 weeks sick leave ( only 51 so still got to work) I am tiring and aching by end of day.The advice here is to go slowly with reducing, the quicker you reduce the more likely a relapse and to reduce by no more than 10 per cent of the current dose each time and to stay on new dose for at least 4 weeks to make sure you are completely well before the next reduction. There is some fantastic advice on here from far more experienced people than myself who I am sure you will find a great support. Good luck!
I too am still at work (54) in a residential home working nights (only 2 a week) it was easier than working days plus I physically became unable to get out of bed in the morning! I have been gathering all of the information I can from you lovely people so that I will hopefully never have to have that pain return again. I shall be watching your progress & truly wish you all the best in your journey too x
Hi there PamOakes....I had a sinus op prior to being diagnosed and the next 4 and a half weeks were hell as I became more and more in agony and immobile. Once in bed I couldn't move and couldn't lift my legs get out of a chair climb the stairs etc . I was like an old woman. The G P thinks the physiological stress of the operation brought on the illness. The PMRGCA UK website is a good site to access lots of information including other people's journey's and some research papers as well as details of support groups. I am not sure how I am going to manage work in the long term: I have had a bit of a phased return and been mostly in my office until today. Now I am struggling and very achy.Time will tell!!
Thank you for that info, I'm back on a 9 1/2 night shift with 11 residents in a care home on my own on Monday night 😢 (the manager is there, but sleeps on the premises, if I need him) just know I'm going to feel it! I had gone right off my legs last weekend & got an emergency appointment for my blood results & steroids on Tuesday morning, thankfully I too can now turn over in bed & dress without crying. I'm arming myself with all the advice & info I can find. Thanks for the pointers I shall investigate further x
I started on 20 mg but felt really hyped up, so within a week with Dr approval, reduced to 15mg.... My pain still stayed away. Just a thought to consider trying ...... Within the 1st 2 weeks you can reduce or stop without too much problem. After that your body will shut down production of cortisone so you rely on the pred. The plan will be to reduce to a level to keep pain under control ....maybe 15 mg would work for you too? Higher doses obs take longer to reduce and you will reduce side effects on a lower dose
My rheumatologist got me to reduce from 20mg to 15mg after three weeks even though my blood markers were pretty high. In my case it was a total disaster and much too quick. He did not seem interested in me getting flare ups, but just wanted me to reduce. I was naive enough to listen to him and thought I should have pain, I have learnt from bitter experience. Now I will tentatively cut down slowly and if I have pain I will stop the reduction until I feel OK to carry on. It is great when you can actually do things after just a few hours on pred, after being virtually unable to move. I still lie in bed and think back to before I had pred and how awful it was.
Thank you for the advice. After what you have all said about this I feel I can now take some control over my treatment with all of your back up & feel brave enough to speak up & ask questions.
I am so pleased to have found this group as I've learned more from all of you than in all the info I've read about pmr & feel I know more about what to expect from myself & my doctor
Pam, it sounds as though you have had a good response to your starting dose so it would be a pity to spoil it now by reducing too far and too soon. You should remain on this dose for at least 4 weeks, and then perhaps try going to 17.5 for another few weeks.
The other most important piece of advice we can offer is not to overdo things now just because you feel better. Remember that the steroids are not curing anything (nothing does at present), they are just damping down the inflammation that causes the symptoms. Many of us have learnt to our cost that if we overdo things on a good day, particularly in the early days of treatment, PMR can come back to bite on the next. So give yourself lots of TLC, particularly following any reduction in dose, to allow the steroids to do their job. Lots of good luck wishes.
Thank you so much for that kind response, believe me I am in no rush at all to reduce the dose.........only yesterday morning was I wracked with pain & unable to walk, I feel better yes but trying to tread carefully & pace myself. I treated myself to a half hour wander around the park today & it was so nice! I work nights in a care home & have to return to that next Monday (dreading that) but will only be working two nights a week so hopefully will be ok. I am really grateful for your advice and all you've said is duly noted. Thank you & good luck to you too
I feel I'm in the same boat! Have come down from a 30mg start in. January. First to 25mg, and now to 20mg. Being a man, I'm probably overdoing it, but so far, so good.
Seems to me we all react differently, and I am trying to take control of the PMR myself, whilst consulting with my GP.
As you say, this forum is full of excellent advice which is well worth following.
Yes I think it is different experiences & a lot seems to depend on how knowledgable our doctors are. I am on day 4 of steroids now, still much better but a little more stiffness if I've walked the dogs & when I wake up (but 100% better than I was on Monday!) I too am finding it hard to rest more as life is busy & I can't afford to not work........back to 9 1/2 hour night shifts in a care home on Monday & know I'm going to struggle but what do we do?!
Can I just apologise for the amount of times I've mentioned my job! Just read back through my posts & sound like a stuck record lol! I guess I'm just worried how I'm going to be & dread that awful pain returning..........so scared of that 😩
I'm not surprised your job is a central concern for you. Those of us who don't have to go out to a "proper" job are in awe of people who continue working with PMR and have no idea how you manage! I worked for 5 years with PMR and no pred - but I work from home as a freelance translator. The worst problem I had was getting moving again after sitting at the computer! There was no quick dash to the loo believe me!
The pred should keep the pain fairly much at bay but I'm not sure how you will get on working nights while on pred - I know a couple of people who had to swop to days while on pred though they were on higher doses for GCA, not sure how it works with lower doses and the circadian rhythm. Possibly worth asking your doctor?
Hi Pam, I have had PMR for 3.5 years. Like you I have had to work, I work as a nurse doing 12.5 hour shifts 3 times a week. I found Occupational health very good. They made me exempt from night duty due to the medications I take, and I do a maximum of 2 long days together then have rest days. I won't lie, I do find I need those rest days to recover. I am also fortunate that I work among other nurses who have a good understanding of the illness and are very supportive. In the early days I found the exhaustion challenging, but that lessens as time goes on. I agree with PMRPRO that you may find nights hard on your body clock and planning what time to take your Pred.
Saying all this I have however been off sick for the last month, with symptoms of GCA that are being investigated, but that's another story. I find it best to be open an honest with your boss about how you feel, my boss knows the days I'm struggling and plans my day accordingly. So I may do admin in the office rather than the challenging heavy patient care. Take care and hope all goes well for you on Monday. Best Wishes Runrig xx
Thank you both for your replies, very helpful as I hadn't thought about it being at probably the worse time of day as far as our bodies are concerned & dosing ourselves, I will have to see how this next week goes & speak to my boss (not the most caring or interested human being I've ever met) Wish I could afford to give myself another week before returning but hopefully I'll manage.
I see my doctor again on Wednesday to see how I'm getting on with the pred as I haven't seen her since diagnosis on Tuesday, still getting a little stiffness in shoulders & hips mornings & evenings but all in all much better than I was.
I am so thankful for this site & you lovely people
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