Well just as I thought I was pain free it all flares up again. Was on 20mg for a month then last Weds dropped to 15mg as doc said to. Friday I was very ill with the pain, couldn't get out of bed so rang doc and he put me back up to 20mg for another 5 days then said to drop to 15mg after that. I should be dropping tomorrow but no way I can as even on the 20mg I have not got over this flare up.
Yesterday I could not get out of bed or make anyone hear me for help so had to really struggle. Today bless him hubby woke me before he left for work to see if I need him to help me up. This is not what I was expecting and the grand age of almost 49 (2 days time). I was able to get out of bed today but oh my goodness my neck, shoulders and back are agony.
I have taken paracetamol to no avail so ended up calling the doc. My usual one is fully booked then on holiday for 2 weeks from next week so agreed to a locum ringing me after 3pm today.
I am suppose to be having a blood test next Tues for my CRP but doc wanted after 2 weeks on 15mg so looks like I may have to cancel that for now.
I am wondering if today the locum will increase my Pred or stick with the 20mg. I will also ask what painkillers I can have as am diabetic also.
I just want to sit and cry, which I did yesterday morning when I could not get out of bed.
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Sue8
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Now I really want to cry. Doc just rang me. He has increased my Pred to 30mg to take at least 7 days then to drop to 25mg and see how we go but to pop in and see a doc before reduction. He has then given me 3 more meds. 1 he said was to prevent ostioperosis and it is 1 tablet once a week and I have to sit upright and still for 30mins. Another is a calcium something or other and another to protect my stomach. So with other meds will be taking 12 tablets a day and that's not including painkillers which he has also given me, an anti-imfamatory and paracetamol. I thought it would just be stay on 20mg pred for longer then reduce slower.
Don't cry babe, you just hit gold. At last a GP who has the guts to handle PMR with the pred that will knock it out within, if not hours, then a few days. This is the dose that I was put on twice.
The doc. has also given you meds to protect your stomach and your bones. It may seem rather confusing at times, but you'll soon get the hang of it. I have a nice cardboard box that I keep all my meds in and I have no probs. The one a week jobby is to keep the calcium in your bones. You have to sit up because it can irritate the tube that runs down to your stomach. The calcium is to make your bones strong. Remember, pred tends to weaken them. The painkillers. You prob won't need them for ages. The high dose of pred will handle it all I'm sure.
This high dose won't do much damage as you'll be back to 20mg within a few weeks so don't worry. What you might get is some rather spectacular dreams and be a little over the top when you're awake. If it happens just reassure your loved ones that it's all down to naughty pred and you can't help it. Believe me, although it can be an unpredictable ride at times, it's worth it. One day you will look back and smile.
Yes. When you're down to 20mg, linger awhile. Then drop much more slowly. I could only drop 1mg every fortnight. It worked.
oh Pats I feel so down with all this. My hubby been great though. I managed to get out of bed this morning but it took me about 15 mins crying between every move. I have to go get all my new meds this morning and make appointment to see doc next week. I am really hoping this locum is still there for me to see cos just talking to him on the phone I could tell he knew about PMR. As far as the meds go my eldest son is a specialist nurse so he will guide me but he lives in bromley about 150 miles away.
Does your PMR go down your arm to your fingers??? It's always my left arm that's worse and my fingers swell on the left hand.
A few months ago the doc suggested using a neck collar to limit my neck movements, does anyone else do this?
Yes Sue as per query re neck collar, I do, it certainly helps, but I only use it when I feel it absolutely necessary, I have had 2 x whiplash injuries too, so often get a little pain I have to deal with in the neck. I have a hand splint too as my right hand often gets very painful and I find a couple of days with both appliances is enough to get me back on track. JC
Hi sue sorry to hear all your problems you say your gp has given you a med for osteoporosis ! Have you been and had a dexa scan and talked to a bone consultant about this ? I was diagnosed with osteoporosis 3 years ago all before these latest pmr was diagnosed and was put on meds which knocked me off my feet after a week I stopped taking them and found out through other patients they have terrible side affects, so I just take pain killers and eat healthy and refuse to take any of the drugs on offer as patients are not told enough about them , unfortunately having been on the steroids now for 3 months as you proberbly know I just can't stop taking them and it can now take up to a year to taper off them, in my opinion not enough is told to patients about these steroids and by the time the problems have started its to late , so please investigate any drug that is offered to you before starting it your gp may not be happy but let's face it at the end of the day it's your health not his /hers that's involved. I question and check everything now
Oh dear Sue, poor you. We did think it was going to be a tall order to reduce from 20 right down to 15 in one go didn't we. At least the different Dr today has wisely increased you up to 30 and is suggesting monitoring you before reducing again.
A word of caution re the anti inflammatories though - they are not really a good idea alongside steroids as far as your stomach is concerned.
At a recent presentation given by the President of PMRGCAuk, Professor Dasgupta, he was strongly of the opinion that GPs should take at least one opinion from a rheumatologist, and I think this is essential for you now that you are having problems reducing the dose.
I do hope you will soon start to feel much better with the increased dose.
As this doc yesterday was a locum I am wondering if I need re-referring to a rheumy. Like I said to Pats above just talking to him on the phone I could tell he actually knew something about PMR but I do not know how long he is going to be at our surgery. I will ask this morning when I go fetch all my new meds.
My GP killed my dose from 20mg to 10mg after a fortnight, no wonder I felt no real benefit, going from a miracle cure back to square 1.....I did not have faith that they were doing me any good, maybe if the GPs were better informed and passed on what they knew at the relevant time, we would all be better off? JC
Hi Sue it is good you have the tablet to protect your bones and also the stomach protector. I was given both right from the start. I also have diabetes (T1) and diagnosed with PMR last November. I am down to 10mg and slow seems to be the magic word with PMR and steroids. Seems to me you have to trick the PMR into not knowing you have reduced the steroid so if your body struggles with a 5mg drop then try a 1mg drop for 4 or 5 days before you drop another 1mg and so on until you drop the 5mg then leave it a month before you try to reduce again. Hope this all makes sense and things work out ok for you xx
Yes slow does seem to be the magic word doesn't it. I am just hoping my usual doc will listen when I next see him though he is on annual leave for 2 weeks next week so hoping the one I spoke to last night will be there for me to see. We also have a fab chemist next to our surgery who know me well so I know they will be helpful when I go this morning and if there is a problem taking any of them they will say so. I am type 2 diabetic diagnosed March 1st this year after being glucose impaired for a few years. My hb1ac is coming down so the Metformin is working but my sugar levels are all over the place cos of the pred even having had 2 hypo's which apparently should not happen on Metformin. Hopefully this is a new argument for test strips on prescription for me as doc won't give them me cos I have regular hb1ac.
I have been going to the gP for a few years now will all my pain so it's good that I now know what it is, but it is scary having all these meds when I never even used to take paracetamol for a head ache.
Reading about your situation in my dressing gown, waiting for my painful arms and one shoulder to be able move a bit before I can get dressed without a bit of crying with pain and frustration. Thinking of you - especially - with all you have to cope with at present, in company with all the rest of us from time to time, I can't help feeling what a heroine you are, and not from choice. When this is all over, as it will be, what a wonderful lady you will become. In much later years I can imagine your teenage grandchildren coming to you for a quality natter, knowing that you are the voice of experience. I will think of you all day and send thoughts of encouragement. Soldier on Sue. You're a star.
Hi, Sue, I'm so sorry that you are having trouble with your PMR. I live in fear of all that pain starting again, but touch wood, I'm sailing through at the moment. I've put on the once weekly tablet for osteporosis. I took the first one last Sunday, and thanks to all the advice I received from all you lovely ladies, I managed to take it, no probs. When I asked my GP about a Dexa scan, she said I didn't fit the criteria! No broken bones previously! I offered to pay for the scan, but didn't get anywhere with that suggestion, either. So soldier on, and hope you feel better soon. This website is a godsend!
Good news, the locum doc who was fab yesterday is apparently a new senior partner at our surgery due to our long time gp retiring. How fab, guess who I will be seeing from now on.
On the down side all these new meds are gonna take some getting my head aroun some on empty stomach some not some can';t be taken soon after others etc etc. Going to look for a new pil box with times on if I can find one.
Ladies you are all amazing. thanks for being here.
I know exactly how your feeling Sue, I was diagnosed with PMR on the 17th May, started out on 50mg... I have been on 10mg for the last 3 weeks and have been up and down for the past week. Yesterday I went out for a hours drive and was in and out of the car a lot and boy am I feeling it today. when I could finally make it out of bed I ate a slice of bread and upped my pred to 12.5mg there was no waiting for breakfast!! the pain eased 7hrs later. My Rheume wants me to start taking Actonel for osteoporosis its a once a week tablet have you any knowledge of this drug??I haven't worked for 4 months and thought I was doing o.k and was hoping to go back to work on Monday not sure if that will be happening. I live in Australia and am finding PMRGCAuk very helpful, I really don't have any confidence in my Rheumatologist so far. feel better Sue
I have been given Alendronic Acid 70mg tablet to take once a week so must be same sort of med you are having. Along with this I have been given calceos chewable tabs and Lansoprazole. I will start all these on Sunday when I know my hubby will be around to deal with dogs and kids should the need arise as the once a week med I have been told to stay sitting upright and still for 30 mins after taking.
I hope you are able to get back to work soon. I do not work as such as I home educate my 2 youngest (13 & 6) but am lucky enough to have a husband who is a workaholic and earns a decent wage to support us.
Hi Sue,
Good idea to take the "once a week jobby" when your hubby's around. A dosette box for your meds will be great for you as you're not used to taking lots of meds. Your local chemist should have one and, also, why not have a chat with the pharmacist about your medications as they are much more knowledgable than GPs about drugs?
So pleased for you that the GP who has been a great help is going to be around in the future to support you. It must be such a relief.
Your hubby sounds great. It's feels good to be looked after sometimes doesn't it. I feel so sorry for folks who are on their own with PMR. It can be such a lonely illness. I remember feeling so isolated when I first got it.
You mentioned getting symptoms in your arm and hand. Yes, I have them too, also in my left hand and arm. I even had an operation for it because it was said the numbness and tingling I had was caused by pressure on the ulnar nerve, but the op didn't work. After a year, I still have numbness etc. I guess I always will. My hand became quite weak so I exercised it like mad and I'm proud to say that all the strength came back. Maybe, after the PMR subsides, the hand and arm will get better, but the hand still works well so I'm not fussed.
Try not to worry too much. I know it's much easier said than done, but there are a lot of us on this journey, and what has struck me from when I started to talk to others like me, is, what a feisty lot we are.
I am really sorry to hear of all the problems you have had Sue. I had the same thing reducing from 20mg to 15mg. It all flared up again. Someone pointed out that the drop from 20 to 15 was 25% of the dose so to reduce much more slowly. I am now taking things very, very slowly ... last week it was 13mg 12mg on alternate day; this week 12mg each day.
That brings me to Pats last comments. I started all this with tendonitis in my left foot. The day after the tendonitis went (4 months I had it and was under a physio) the PMR started. I also started to experience tingling and numbness in the toes of my right foot. The tendonitis returned soon after the PMR came and has never gone away. I have been advised that a directional ultrasound injection may cure the tendonitis and the right foot problem has been diagnosed as tarsel tunnel syndrome. It has been advised to have an injection for that foot too. This week fingers on my left hand have been tingling and numb at different times. Having read that your operation was not successful Pats I am wondering what to do. There is apparently a backlog of people waiting for this in Bromley (near where I am) and I was wondering whether to use our private insurance to see if I can get some help. Now I am not so sure! I can live with the numbness and tingling but the tendonitis is making it difficult to walk. I fell over last week so taking a stick when I venture out now. The last thing I want is to break anything!!!
ooo my eldest son lives in Bromley, in Shortlands. He is a sufferer of Ankylosing spodilitis but still works at the neurosurgical hospital down great ormaond street as an admissions nurse.
My fingers in my left hand are always the most painful ones and it is the left arm that is more numb.
After taking 30mg of pred then a Naproxen anti-inflammatory I feel loads better already.I start the Lansoprazole tomorrow morning then on Sunday witll start the once weekly tab .
I'ts hard to offer advice. You are in danger of falling. That could be dangerous, but make absolutely sure that this procedure they are offering you has been proven to work for PMR. When I put it to the surgeon that the ulna nerve compression could be due to PMR he was dismissive, saying that it was due to an overgrowth of tissue below my elbow. When I came round after the op. and asked him what he had done, he told me that they had cut away excess tissue. Things seemed to improve. However, when I had a complete relapse in PMR the numbness and weakness returned as bad as ever. What I had done was different to what you are being offered. That's all I can say. Just check it out first. Actually, I wish they had offered me ultrasound. At least I wouldn't have a tender, 5 inch scar on my arm.
I'm not sure now what I want to happen! An ultrasound injection perhaps isn't as drastic as the op you had. I've been told it is basically an injection of steroid into the area of tendon that is causing the problem but as the injection has to reach the target to work the radiologist may decide not do it if he cannot get there. Also I think what is being suggested for me won't necessarily have a permanent result wheras your op can't be reversed.
YAY got out of bed with no probs this morning. Had another Naproxen before bed so hopefully that helped. My fingers on left hand are painful and a little achy but no where near the pain I have had over the past week. So fingers crossed the increase in pred and the naproxen are doing what they should. Off to Leicester city tomorrow guitar shopping for one of my son's who turns 18 in a month so hopefully I can do it without pain and actually enjoy some time with him as it is just us two going. Not doing a lot today as it is my birthday and I turn 49 My 6 yr old is more excited bless her. But I have a brand new shopping trolly So can go to town once more and get stuff back home.
Thank you Pats. Not doing much, just going to have a little go on my overlocker and sewing machine but if it pulls on my neck then I am off. So Tegan my 6yr old will have no PJ's for bed LOL.
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