Well I am up and breakfast had. Now off to doc's for the 1st visit today for my blood test for the CRP. Then back again this afternoon to see the wonderful that sorted my flare last week over the phone. Hopefully will drop from 30mg to 25mg but I am going armed with info about the NICE guidelines of only 10% reduction at a time.
In between this I am going to try a plod to town with my new large shopping trolly the kids got me for my birthday even though my knees hurt. The young ones are suffering because of this retched illness so a little walk will do them good. I will take it slowly.
2 trips to docs and a trip to town...................................probably on the floor later or not be able to get out of bed in the morning so will take some naproxen me thinks.
Hope you all have a relatively pain free day.................keep smiling
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Sue8
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Ok, so 2nd trip to see the lovely Dr at our surgery. He was insistent that I could not drop to quickly so I reminded him of the NICE guidelines of 10%. After a little thinking we decided together to try dropping to 25mg for at least 7 to 10 days and if ok on that to have a phone consultation to see what the next drop will be. He wondered wether to refer to a rheumy but he said at least with him he is at the end of the phone should I flare and need urgent help. I totally agreed with him as to be honest can't see what a rheumy can offer any more than this fab doc. He also gave me as a one off a box of 50 test strips for my diabetes as they are £25 a go and as type 2 they say the hb1ac is adequate testing. I argued that the steroids were sending my sugar levels scatty so he gave me a box
Thanks Pats, he is new to our surgery but he deffo knows what he is talking about. He made sure I understood that I just could not stop taking the pred and to come down slowly was the key. I am so glad to have a such a lovely doctor.
So pleased that you are getting sorted Sue and that you have such a lovely GP!
I am not having pain as such, just in a fair bit of discomfort, Prednisolone dose at 7.5mg until I go back to hospital in September.
However I haven't had any energy at all for about 2 weeks now! Feels like somebody has pulled my plug out of the socket. Can't make my mind up whether it's the weather, Prednislone, or the PMR !
Thank you, How long have you been on pred? Could the tiredness be the start of diabetes even? Sorry don't mean to scare you but I know long term pred can cause diabetes. Unfortunately I had diabetes before the PMR and pred.
I am glad I am not being referred to be honest cos the doc said it is 3 months between appointments so I will stick with my GP who is absolutely lovely and is very aware of this illness which is great.
Been on Prednisolone about 4 -5 months now, not got any other symptoms of Diabetes. I tend to overdo things when I feel great, and then crash ! Will bear it in mind though
I think we all do that Karen, to much then crash pacing yourself is key. I did really well yesterday walking to doc's then to town and pulled a trolly of shopping. My 13yr old pulled it home though. I was expecting not to be able to get out of bed this morning but I am good just some stiffness.
You say you are down to 7.5mg after only 4 -5 months which is quite a steep decrease if, as seems likely, you were initially on 15 or 20mg. I wonder if your GP has brought you down too fast. I'm now on 5mg after 15 months and still struggling some days. I know when I have to take it easy. Just do what your body tells you but not if it tells you to go overboard!
I'm also on 7.5mg at the mo. I seem to be in the same state as you as to symptoms and how to evaluate them. I think you're right, it's multifactorial. For about a week I was good for nothing but the knackers yard - felt aweful, but 3 days ago I began to pick up again. I had got down to 6.5mg before I crashed and I think my body was really struggling, so upped the dose to 8mg for 4 days and gradually got back on kilter.
I think that when we start to nudge the adrenal glands it can cause problems.
Pats
• in reply to
Hi, Pats,
I am in a muddle as to what is what , so I am off to my GP tomorrow.
I have had a sore throat for 2 weeks now with a horrible yellow tongue! And my hair is falling out too when I wash it. I have always had thick hair and my hairdresser commented last week how fine it felt. So I don't know if these are side effects of the Prednislolone or something else!
Good to hear that things are improving Sue. A friend just emailed me a link to an article in The Mail by a doctor who had fibromyaelgia - my rheumy says symptoms are very similar to PMR. I am going to try it to see if it helps the tingling I get in my hands and feet. Anything is worth a go.
Also, I have had a major improvement in my left foot in which I have tendonitis. It had got so bad that at the beginning of last week I made enquiries about having the injection privately as I hadn't heard when I might get it on the NHS. On Sunday morning just after I woke up I felt my toe pop! Then there was a fizzing sensation and I am sure it was blood flowing properly for the first time in ages (in my mind it seemed like a twisted garden hose being unravelled!). Since then the foot has got better each day. There is still pain round the ankle and back of heel but I don't feel my foot is going to give way and I will fall when I am walking and I can wear flat shoes for first time in ages without the pain getting worse. I had been massaging my foot several times a day since the pain had got so bad.
yes symptoms are simular but in different spots of the body. I originally asked my GP if that is what I had and he asked me to google CFS and to let him know what my thoughts were. I can honestly say that CFS, fibro and poly were ALL me. The difference is the treatment. I have a friend very poorly with fibro and they just give painkillers as they do my daughter who they think has it. They give her tramadol and diclofenac. Where as with PMR it is steroids to reduce inflammation. With me it was a process of illimination as I had been going docs for a few yrs. It wasn't until June just gone that I was in so much pain it reduced me to tears so went back to the doc and saw a locum who gave me a reducing dose of pred to see if it worked. If it did it was PMR if not then it wasn't. Luckily for me they worked and for 10 days I was great then they stopped and it flared like never before. I have pain in my fingers most days and my new doc yesterday said it was the PMR which I already assumed from what I had read. My hand actually locks on saucepans etc so hubby has to help.
So glad your foot is getting better, I do have pain in my toes but have been told that is more likely my diabetes.
nor me, since having diabetes i managed to lose 1 stone 1 pound but it looks like that is creeping back on with the damn pred though really trying not to over eat when my stomach rumbles. Good luck with it.
Sue8 you wrote: NICE guidelines of 10%.. Can you give the link or where we can find these Guidelines?
arr nopw you are asking, I will look but it was someone else on here who told me that info.
Sue
I thought they might not exist. NICE have not yet issued any guidelines (as far as I am aware) on either PMR or GCA. The British Society of Rheumatologists have issued Guidelines on the Diagnosis and Treatment of both PMR & GCA.
oh i see, well whoever told me the 10% rule may read and answer where it came from. Thanks
Hi Sue
The group of ladies who started this charity and help lines/website were there for me right from the off when I first got PMR and was desperate for advice. I talked to at least five of them in different parts of Britain on many occassions over about a year. The "no more than 10% drop rule" was mentioned quite often when it came to the advice for reducing pred. I guess no one person was responsible for arriving at the conclusion, that if the drops are more than that below say 20mg, there is likely to be a flare in PMR and if the flare is bad enough then it's up to the top again in the dosage. In the long run bigger drops can mean much more pred is taken to knock back the illness.
I believe that it is easier to have bigger drops if the dosage is greater than 20mg. When I came down from 30 to 20mg I did it over a period of weeks in two 5mg drops, but once I was on 20mg this was not possible for me . The only way I could do it was in 1mg reductions until I was at 10mg and now I am reducing by half a mg at a time. It's hard going.
With PMR/GCA there are no rules. As you can see my ability to reduce below 20mg was no more than 10%, it was even less. Smaller reductions can be made if needed. Also, the time between drops has to be tailored to each individual. We need a good GP and if we're lucky, a specialist who are clued up enough to understand this.
There will always be those who are lucky enough to take bigger drops in their meds, but I think that for most of us it's better to go slowly even though we all want rid of pred ASAP.
My Rheumy is fully behind me in the way I'm handling PMR. She is not bothered by the gradual drops and says I'm doing OK.
Well, I am approaching this website from another computer. I am on holiday with my husband in Devon, and feel really ghastly. I had been feeing so good! I have taken three doses of Alendronic Acid Once weekly tabs, (spread over three Sundays) I have had awful pains in my stomach and bad indigestion. I'll get an appointment with my GP when I get home and try and sort it all out. I think there is something else I can take other than this AA tab. Jean
I am on the alendronic acid also but no probs as I also take the calceos supp and Lansoprazole to help the stomach.
Hi Pk,
Can you get to see a doctor at the nearest hospital. That would be what I would do. Your hols will be ruined if you go on like this. You need meds to settle your stomach.
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New GP
Ignorant GP
Dosage upped today and told I must take Fosamax.
Pred 5 mg blocked by GP until consultant letter produced!
Update .. sad news good news
