Hiya all. I was diagnosed with PMR last May but have changed doctors since then. 2 weeks ago my new doctor advised me to drop my dosage of preds down from 21mg to 10mg within 2 weeks so that he could test me for a skin allergy that had erupted a few weeks earlier when I dropped from 22mg to 21mg. He also advised me that in his opinion I did not have PMR as I also had severe pain in my legs originally and as far as he was concerned PMR did not affect legs. After dropping from 21mg to 15mg the first week I must admit that I did not feel that bad, just a few aches, however half way through week 2 and dropping 1mg a day the pain and aching joints slowly kicked in big time. By Sunday I was almost bed ridden until the remaining 10mg I was still on kicked in.
I saw my doctor yesterday expecting an argument but straight away he backed down, appologised and said that he had misread the notes on screen and accepted that PMR can affect the legs etc. He is allowing me to make the decisions as to pain management and my dosage and has suggested that he thinks the rash and itching is Hives as after I saw him last, he checked up and concluded that my rash was identical to the ones on the web that I had suggested. We are now at peace with eachother and working together and I see him in 4 weeks time. In the meantime I have up'd dosage to 15mg a day and hopefully things can settle down. The moral of this is, we are the ones in pain so do not give in to doctors that try and tell you differently and fight your corner. Good Luck
What a relief that your doctor was brave enough to admit his mistake! Hope the 15mgs work for you. My rheumatologist prescribed Duloxetin to help with my reduction. Last Monday I reduced from 15mgs to 12.5mgs. So far, so good. It is the first time I have been able to reduce with very little extra pain. He wants me to reduce to 10mgs in three weeks time but I will definitely go straight back to 12.5mgs if I have increased pain levels. You are right. Our bodies should dictate the dose not our doctor/Rheumi.
tavidu, a good example of a patient educating the Dr! Well done you...and well done him for his apology and acceptance - a few are not quite so accepting.
Well said debbie and thank you, good luck with your reduction and keep us informed. Best wishes, Dave (tavidu)
Coudl not agree more, I was one of the lucky ones and he admitted his mistake and took the time to listen. Thanks for your support. Dave (tavidu)
Hello, yes you are quite right we feel the pain and not our dr's. It's interesting that your Dr stated that following a look on the Internet they have changed their opinion. I'm never surprised by just how many dr's have very little knowledge of this condition and even less knowledge on how to treat it, although as we all know exactly how to treat it is a tricky science as we all respond to the treatment to different degrees. I have a very good gp who has now left it to me to adjust my dosage as to how I feel and just report back to her if I have any real concerns or when I reach the 5mg mark. I was diagnosed with PMR last dec Although the symptoms presented themselves in the sep. But I went from 15 to 12.5 to 10 ( which I was purposely kept on for 6months) to 9 mg without any real hitch then following a blood test when the bloods were excellent my dr said I could reduce by 1 mg a month or there a bouts depending on how I felt. I was so thrilled but when I went down to 8mg within 2 days the pain in my neck returned then within 16 days had spread to my shoulders and hips, not really, really bad but enough to know that all was not well. So I went back to 9 mg and the neck pain has stopped but I still get the odd twinge in my shoulders and tops of my arms and the pain in my hips has all but gone. So I will stay on this dose for a good month and try to reduce again. I'm telling you this because it is simply an example of a patient that was responding to treatment so well and then at 8 mgs by body reminded me that I'm not quite there yet for such a low dosage, and as much as we all want to get off the steroids we're taking them to reduce the inflammation that in turn causes the pain, so to be on a dose that still leaves us in pain sort of defeats the object. Good luck with getting better.
Well done David, it's good to hear that some doctors do listen. Don't be in a rush to reduce to quickly remember the tortoise and the hare! Best of luck
Major success story there David!!!!
Well, yes, you have a rash that is hives. I'll give him 10 out of 10 for that! The question is what is CAUSING said hives!!!! Hives is the common name for urticaria, and it is often a symptom of something underlying it. Pred can cause hives itself. However, it is possible to have something called idiopathic urticaria which means "of no known cause" and that covers about half of cases.
Anyway - has he offered you anything to try to take the sting out of the rash? It is mainly caused by histamines being released and I use Loratidine, a non-sleepy antihistamine available OTC for about 80p from Lidl (don't go to Boots, they charge about 20 arms and legs in comparison!). If you are lucky your GP will give you a prescription which makes it even cheaper if you are over 60 or have a pre-pay card. If the normal dose of 10mg doesn't do the job well enough - take 20mg. All recommended by an immunologist - I have a bizarre and very unpleasant typical allergic reaction to something in some red wines so she told me to take loratidine as we could look for years and not identify what it is that does it. So I said "But it says not to take with alcohol..." "It's fine" she said. And it is, although I usually take it at bedtime. But it has worked perfectly - so well that occasionally I forget to take it when drinking red wine, I don't take it all the time, just when it was a red wine I don't know. Then I get reminded WHY I take it.
From experience I would say that is too fast - no drop should be more than 10% of the current dose so 1mg would be far better, 1.5 is 10% of 15. And by using far smaller steps the pain of reduciton is also reduced without the need for additional drugs.
Though I will be very interested to hear if Duloxetine does the trick.
I agree, it is our bodies
Firstly, thank you all for your support. It is fantastic to know that you all are out there supporting eachother. A special thanks to Eileen who tends to be there for us all and keeps us on the straight and narrow. (can't believe she shops at Lidl). The doctor has prescribed me with Atarax hydroxyzine hydrochloride for the itching etc, it might not do much for the itch but certainly helps me sleep. I see hiom again in 4 weeks time and he intends to do my " well mans" yearly blood tests and a few others as well as allergies and thyroid. By the way Eileen you sound like my wife but she usually takes "her wine" at bedtime not loratidine. Best wishes to you all, Dave
Don't knock Lidl! They sell named goods as well as their own makes, and at much cheaper rates. In Germany, where I live, not only people on low wages shop there and it often comes out better than a lot of "so called" upmarket stores in the media. Give it a try!
Don't tell anyone constance but we were there in the Salisbury branch yesterday, better than Tesco and Sainsburys any day. Not many stores in Hampshire yet but they are coming.
Of course I shop at Lidl - I lived in Germany for 10 years and shopped at Aldi LONG before they thought of bringing it to the UK (and Ikea if it comes to that!). And at the other version found in Germany called Norma. Lidl is a relative late-comer but when in the UK I prefer it to Aldi since Lidl carries a core of products that are the same in all countries - so we get the Germanic essentials. And next you will get Netto - also good for some things unless Sainsburys mess it up (they have bought it I believe to try to get their customers back).
In Erlangen where I lived the customer population included University lecturers, surgeons, business people - nothing downmarket about it at all. On German TV they have consumer programmes where Aldi and Lidl regularly top the taste surveys.
At present I'd suggest anything was better than Tesco - they really have lost their way in the last few years. And Sainsburys are finally realising that "the customer experience" doesn't top the fact of your pocket being picked as you do your shopping. Reward points don't make up for average quality at top prices. And one thing I have never met in Lidl is some electricity company salesperson trying to persuade me to sign up with them. Week after week after week - saying no once wasn't enough. I can only assume they had dementia of some sort...
I to have a great GP and Rhuemy who understand that I know my body and how to adjust my own dose. I referred my Rhuemy to this site and I'm not certain that he has looked at it but has been very interested in the very slow reduction plan. I've been on pred for 20 months and despite a couple of hick-ups (one nasty flare that was self induced) I'm down to 4mg. Having surgery today so hopefully that won't cause any problems.
Keep up the good work and hopfully the PMR will burn out sooner than later.
Hi all
In my opinion, anyone who hasn't discovered Lidl yet obviously has money to burn.
Good luck with the op Mrs Mac, will be thinking of you. Dave
I know blodwyn, this could get me more hits than PMR. I promise everyone that as soon as I am better I will do a big shop at Lidl and Aldi and spend my entire pension on goodies (and a bottle of wine for the wife as I do not drink). xx to you all.