PMR

[blackbirdy]

I have a bad back and thought my poor mobility was due to that until one day I just could not move my legs or raise my arms. I went to my GP and she took some blood tests. Later that afternoon I received a call from my GP saying she thought I had PMR and had to go on steroids. After just one day I felt like a new woman, but was not happy to take steroids. I tried to reduce them too quickly and my syptoms returned with a vengence. I am now ,3 years later still taking 5mgs daily but I dont think my PMR is going to go- sadly. I have put on a terrific ammount of weight and my face is very bloated. I do worry about the long term effect in taking steroids

[corralie]

Hello Blackbirdy

Am I right in detecting a bit of sadness?

Do try not to feel defeated. i am sure you will get better and be off those horrid steroids eventually.

I know how you feel though. I was diagnosed 7 months ago and am now down to 6 mg. Symptoms are giving me a hard time this morning - just been for a slow walk around the block - and I'm feeling a bit low. The mood will pass and the symptoms, hopefully, this afternoon. If not, I'll take Ibrufen. But am determined not to go back to a higher mg.

It's a slow process and we must have patience (so my consultant says).

PMR can 'wear itself out', you know, but it takes time, some longer than others.

My thoughts are with you.

Corralie

[Jett in reply to corralie]

Hi Corralie

Like you I was diagnosed with PMR in December last year but unfortunately have not been able to reduce my dosage at all and I am still on 20 mg a day. I find the most depressing element of the illness is the fat face and facial hair, are you having the same problem. Also are you having any problems with headaches or your eyesight

Jan

[blackbirdy in reply to Jett]

have a real problem with facial hair ( I had black hair in my youth So have always had a slight problem) but i now have hair growing on my chin and neck. My Dr has not been very supportive and she has just retired and so I am now going to see her replacement a youger Man who hopefully will give me some support The problems with my eye sight I think are more age related (i am 65 in September) I dont know where all you ladies are from but I live in Plymouth Devon uk

Lesley

[corralie in reply to Jett]

Hi Jan

Am on 6 mg a day. Am decreasing by 1 mg a day over a month.

Still get symptons. Have a thin face naturally so to be honest there is a slight improvement!! Facial hair minimal. Eyesight (my weaker right eye) affected somewhat but at start of disease I had Giant Cell which caused double vision and I'm sure that did not help.

As I type this, have neck and hip ache. The weather doesnt -help, so depressing. I live in the south east, and its grey, grey, grey. Happy days!

[blackbirdy in reply to corralie]

Hi Corralie

I do feel so long on steroids does bring you down. It is very hard trying to keep positive and I only take 5mg and that is not enough but I will NOT go higher. My husband had a male friend who had PMR and it went after 2 years, mine is now 3 so I quess I must be unlucky.

thankfully I am clear of GCA which is terrible

lesley x

[EileenA]

Hi Blackbirdy,

I thought I would share my story, in case it helps you. It started April 2008, three weeks after an operation under local anaesthetic, the stirrup my leg was in, came undone and I had to hold my leg in position for 10 minutes as the nurse was assisting the surgeon, whether this has anything to do with it, I will never know. I'd been feeling ok after my op so went for a walk, which was a little further than I thought, the next day, I couldn't get out of bed with the pain in my hips.

I was in agony for two and a half years, sobbing at times with the pain and my husband had to help me to get dressed, but both the GP and rheumatology consultant said it couldn't be PMR as I was too young (49 at the time) and my ESR levels were not that high.

Anyway, after breaking down in the doctor's surgery, she admitted it could be PMR and put me on 15mg steriods, (Xmas 2010). Marvellous things, but like you, I wasn't comfortable with taking them. I very gradually came down and in Feb. this year I was down to 5mg, I had also been given 2.5mg tablets and told to try to alternate them to get to a lower dosage, that didn't work, the pain came back with a vengeance when on 2.5mg.

I put in a repeat prescription in Feb for my usual supply and another GP from the surgery phoned me to say I had to come off them, as they would be stripping my body of calcium and vitamin D. I explained that when I went down to 2.5mg the pain was horrendous but he told me I could have 1mg tablets (I didn't even know they existed) and try 4mg for a month, then 3mg and so on. Well, I'm now down to 1mg a day and although it hasn't been all plain sailing, I've occasionally resorted to pain-killers, I feel so much better. My swollen ankles have gone down and don't feel quite so puffy. If you haven't been offered the 1mg tablets, like me, I would definitely recommend them.

I have also been taking cider vinegar and honey mixed with water once a day and this seems to have helped my joints, my knees no longer creak as I walk upstairs.

Sorry this has been a long story, but if anything helps then it is worth it.

Keep strong, EileenA

[Prd2122 in reply to EileenA]

Hi Eileen,

I have mild PMR so I'm not taking any prednisone. Like you I do drink a glass of water with 1-2 tsps apple cider vinegar every morning. I also read about turmeric tea and drink 1 or 2 cups a day. I take 1 tbsp. of Udo's 3-6-9 oil every morning. Hot epsom baths in the evening, hot showers in the AM, and a spray that cools the arms helps control the pain. I also find that a hot pad when I go to bed is very helpful. I quit wine for now, and allow myself 1 cup of coffee. Lots of greens, no wheat and no sugar - this seems to be making a difference. I get some exercise each day and that gets the endorphins going.

I was taking Ibuprofen or Tylenol - seemed to help - but I also read that they don't do anything for PMR pain so its interesting that they helped you too.

This is a life changing disease. I'm just starting (actually this is my first good day in a month) to feel better,

Pam

[blackbirdy]

Hi Eileen,

You do seem to have a bit of a time with this wretched illness. I do have swollen ankles like you but I know a lady with PMR and she has no weight gain apart from the pain and stiffness copes very well. I take anti inflams but I dont think they work. I am going to stop them. I have an under active thyroid which is not helpful with this. I live in Devon UK and I did attend a PMR meeting near Taunton Somerset in which they had a Rhuemy nurse in attendence. All very helpful but too far to travel for a meeting just over an hour. I do worry at taking these steroids for over 3 years and what it is doing to my body.

Lesleyx

[Hidden]

Hi Blackbirdy, My heart goes out to you. Your worries about your health problems and having to grapple with ongoing steroids. I have only just found your blogs so I'm a bit behind you. I have been on pred for 17 months. I came down too fast the first time- from 30mgs to 3mgs in 7 weeks, with the help of much ibuprofen. My own doc who had not prescribed the pred in the first place said he didn't think I had pmr and he wanted me off pred. I had to rely on ibuprofen to kill the pain. I must say it did a pretty good job. I was on 3mg of pred when I saw my rheumy. He was nearing retirement and very experienced. His verdict- You are a classic case for pmr and I'm certain you will have to go back on the high dose of steroids. He was right. I relapsed because I had to stop the ibuprofen. Back to 30 mg again.

17 months later I'm still on pred, but now it's 7.5mg. I honestly think that much of the secret to getting off this drug is to do with the size of the reductions and the length of time you spend on each dose. At the higher doses- above 20mg I could drop in 5mg doses, but below 20mg I had to drop by no more than 1mg at a time and the weeks between each drop varied a lot depending on many things- the weather, stress levels in my life, infection (I got shingles) and that set me back, doing too much ect, etc. You have to listen to your body. Only you know how you feel. This is my take- if you feel unsure, don't drop. If the pain doesn't go or comes back go back up to the dose that handled the pain. Stay there until you feel you can cope and then try again. What you need above all is a good rheumy who understands this disease and is willing to prescribe the tablets in three doses- 5, 2,5 and 1mgs so you can fine tune the drops. I found that when I got below 10mg it was hard to drop by even 1mg at a time. My rheumy said that I'm doing very well and she was quite happy for me to drop by half a mg at a time in every month. The last drop two days ago I did in half a mg from 8 to 7.5mg. This is were the 2.5 mg tabs come in handy. you don't need to start chopping 1mg tabs in half.

I too worry about the long term effects of pred, but it's all we've got and it's a wonderful anti-inflamitory. I've had pretty aweful side effects until I got down to 10mg and then they have slowly gone away.

I too have had all the side effects you have experienced and more. There have been days when I have considered suicide. On 30mgs of pred the veins on my legs seemed to be on top of my skin. I would start a conversation with complete strangers in a very loud voice. You should have seen some of the looks I got! As a natural red head it came as complete suprise to find that I was growing a lovely black mustache and the rest of my face was covered in blonde hair. My shoulders and back were clothed in blonde hair too! My arms, hands, legs and feet had a covering of hair in various shades. I suppose I had two options, laugh or cry! I did neither - I went to Argos and bought a Lady Shaver and spent a lot of time whilst having breakfast getting rid of it all. Strangely, my partner said he never saw it. Lets not think about that one! Personally I think I looked like an extra in the film "WEREWOLVES IN LONDON".

I too put on weight, but it's coming off as the pred is lowered. I really try too watch my salt and sugar intake even though it's very hard at times. I believe some of the weight gain may be due to fluid retention due to salt and sugar which my body can't get rid of due to pred. My diet is rather boring, but a glass of red wine helps a lot!

You may be interested to know that I live in Devon too. My eldest daughter lives in Plymouth like you.

Small world Lesley,

All the best, Pats. x

[blackbirdy in reply to Hidden]

Hi Pats.

Many apologies for not responding but I had a problem with my computer. I eventually

bought a new one and I am now up and running. Well perhaps not running -in fact hardly walking.

I have been taking simvatatin since before my PMR was diagnosed and a friend told me you must not take the two. I asked my GP and was assured there was no problem. I really have problems with the top of my left leg and hip joint and it started soon after I began taking Pred. My muscle is rock hard and causes me a lot of discomfort. I am convinced this has been caused by simvatatin but having read up on people who take Simvatatin several have had muscle problems and sadly it is permanent. I dont know sometimes whether its the medication that causes so many problems. I am by nature a person with a sense of humour and lets face it with this illness - you do need a sense of humour. I have a wonderful new first grand son called Ben- who I love beyond words but sadly even though he is only 6 months old I find it very painful to hold him for too long.This is where this awful illness hurts in more ways than one. Fancy you living in Devon and your Daughter actually in Plymouth.Yes it is a small world

Kind Regards

Lesleyx

[Hidden]

Hi Lesley,

So nice to hear from you again. I have not taken simvastatin myself, but a quick check on the net has uncovered some interesting data. A lot of people seem to develope problems with their muscles after they take this drug. It's interesting that your GP sees no connection between the problem you have and this drug.

Did a specialist diagnose your PMR. If so then ask to be referred back to them. If you have not seen a specialist yet, then in my opinion, you really need more than your GPs advice.

Hang on to that sense of humour, and add hope.

I really feel for you. You have complications and I think you need more help than your GP is giving.

Congratulations on having a young grandson. Cuddle him on your knee. Less stress on your hips and shoulders. Short cuddles now, no marathons!!

All the best, Pats. x