New to PMR

Hi tiggersue and welcome - we'd rather you weren't here but if you have PMR you are in a good place for advice.

It all sounds quite familiar - everyone is different in how they show their PMR. What is common to us all is that we feel a lot better with steroids. Have you seen the other thread from tranent? Some people take one dose and everything starts to work almost properly within hours, sometimes it takes longer. But if it is PMR you will feel a lot better physically and very soon, 70% better within a couple of weeks is absolutely typical.

Lots of people are scared of steroids, they have had a bad press. But they are not usually anything like as bad as they are painted. The usual starting dose for PMR is recommended at 15mg/day. That isn't a very high dose - if you had GCA (giant cell arteritis) you would start at 50mg or even more to avoid damage to your eyes.

I won't fib - you will probably have some side-effects: there are 82 plus recorded. Noone we've heard of has had them all. As you reduce the daily dose to find the lowest dose that controls your symptoms the side effects will reduce too. We all react differently - only time will tell how you will react. Nor will I try to tell you that you will be 100% as well as you were pre-PMR - you might be, you might not be. You not only take the tablets, you also have to learn to manage the disease by adjusting the way you do things to some extent. But there is a community here and on another UK forum dedicated to PMR and GCA who will explain what you don't understand, tell you their experiences and offer suggestions to help you adjust and "come to terms with PMR".

If you visit the other forum (pmrandgca dot forumup dot co dot uk) and sign up you will not only get all the help and explanations we have here - but you will have a good laugh as well (cos we're a bit mad over there) and possibly find a support group in your area where you can meet other real people face to face who also have PMR. There are groups all over the place from Kent to Scotland. There is one website associated with the northeast of england support group where you can find loads of medically approved advice and information and they also have a DVD to buy to explain to you and family and friends all about PMR and the effect it and its treatment have on you and your life - because unless they've been there too they won't have a clue. Even GPs say they have found it useful.

You are not on your own (You're not Alone is the name of the DVD) and we are always willing to lend an ear for a moan when you are feeling down. Because that will happen - but don't ever suffer alone and in silence,

come back very soon and tell us how you get on with your GP and ask any questions you like - someone will try to answer them what ever they are,

Eileen

i said the very same thing a year ago steroids frightened me to death but with the support of this forum i have learnt to understand this condition and be in control ,yes steroids are a pain but they are basically the only thing that works so once you come to terms with them been your friend not your enemy you then learn how to start reducing the dose slowly down so they still contain the inflamation they do not cure the condition that is done by your body when its ready ,and that takes time so you are in for a long haul but not alone there will be ??? so ask away we have all bought the t shirt and will help you .carolk

I have had PMR for about 5 years now and been on Preds for 4 years. Currently my new doctor is trying to lower them. They aren't as bad as you think and you can certainly manage the pain better with them. I have pain in the upper arms and suffered dreadfully with my neck and shoulders. I don't have pain in my hips but they don't work well ie turning over in bed, also walking I seem to take 2 steps forward and 4 back. I also suffer from sleeplessnesss, sweating and shakiness; tingling in my toes and fingers (when the dose has been lowered too much). I think my previous GP didn't know very much about the condition. I certainly have the munchies as I am also hungry and have put on weight I really don't want! I am no doctor but your ESR seems high.

Hello and a big thank you for all your replies and support. It certainly is a scarey time. I saw my GP on Thursday and she has started me on 15mg of Pred and I have to see her in 3 weeks after having another blood test.. I am very scared about the steroids but guess I need them. I was interested to read Pamella that you also have the tingling, that is what sent me to the GP as I was getting that and also my legs felt like they were going to cramp up but guess that was stiffness. It is great to have a place to share all this and will keep looking in. Many thanks.

Hi Tiggersue - Usually as soon as you start the Preds you should get some relief. When I first went to the Drs they said the tingling in my fingers was carpel tunnel syndrome and it was like walking on cobbles with my feet which they said was plantar fascitis. Then one of the GPs decided to do some blood tests whiich revealed PMR. I am currently down to 5mg but am having some pain in the tops of my arms and the sleepless nights are back along with the sweating. I have to see my GP for monthly checks, so will let you know how it goes at the end of the week. Hope all is going well with you.

hi tiggersue good luck with steroids hopefully they will help quickly and your esr will have gone down as you become used to pmr and pred you will not rely on the bloods to tell the tale , you will get to know all the signs to tell you when to start reducing the pred ,this site will help you understand by answering your ??? as you go along ,so although this the start of a sharp learning curve (and i am still learning one year on )you will not be alone carolk

Hello all, many thanks for the good luck wishes. How is everyone doing? Have many of you suffered side effects from steroids and if so what kind of things? I haven't had the crippling pain that some of you describe but more aching pain and occasionally acute pain that passes, for 3 days last week I couldn't move my hand, the base of my thumb was agony and I couldn't move it, the pain felt like it went up to my elbow as well. It went just like that taking some washing out of the machine. I hope everyone has a good night.

Sorry that wasn't very clear, I meant that the pain in my thumb happened just as I was taking some washing out of the machine. It is better now but still painful to touch. Also I had a very bad kidney infection just after Christmas and was wondering if that could have been a trigger for the PMR? Does that happen?

you pay your money and take your choice the answer is no one really knows what starts it off ,there are many tales of points where people feel it started and often in hindsight they remember been vaguely unwell or like you very unwell .the condition affects people in different ways but take heart there will always be someone who says yes that happened to me !!!! i have problems with my hands at times and opening jars of pickles etc are something i have to have to have a gadget or a very smug husband who does his tarzan act !!!!there are many side effects with steroids i have been lucky and tolerated them ok but i think the best attitude is not to anticipate the worst you need them to control the inflammation/pain they do nothing for the condition ,see it as diabetics have to with insulin, at least you will eventually be able to come off them but please remember this is not a race slow reductions are the answer so keep in touch and learn all you can so you are in control carolk

Well......here it goes, my first dose of steroids....fingers crossed..!!!!I I think I read something about carbs? I am taking them with a breakfast of sliced banana and fat free yogurt. Will have to go through the posts to see what it wasI read about carbs. Good morning to everyone and thanks Carolk, I have a Tarzan like yours but up until PMR I was the one to do all the heavy, hard stuff as he is unwell, crippled by arthiritis but he has his gadget that makes him feel like he is the man swinging from tree to tree in the jungle...!!!

yes steroids best taken am before 8am if poss with food the whole dose togetther fortunately they are small but are foul tasting if they get stuck .good luck you will be fine carolk

I had a lot of hand pain - sharp stabbing sensations when I bent a finger - the disinterested rheumy claimed osteoarthritis, now I realise it was tendonitis - and the base of my thumbs was bad too. Even with gadgets I still can't open jars!

PamElla - oh yes - the cobbles under the feet, mine felt as if they had been bound like Chinese babies too! But it really wasn't typical of plantar fasciitis. Just awful when I stood or walked - not much of a handicap then :D

Carbs - try to restrict them, especially if you crave them on pred. I craved them with PMR, it went away with the pred immediately. Keeping the carbs down should help a bit with the pred weight gain if you are a victim - some people lose weight on pred. Lots of people find having a low fat bio yoghurt saves them needing the PPI stomach protection meds. Remember, don't take your calcium tablets within a few hours of the pred.

As Carol says there are loads of theories as to what can trigger PMR. Most people can identify stress or illness in the run up - but for some it may have been a lot of exercise where their muscles didn't recover as expected. There is no real evidence of a viral involvement - other than possibly the stress of the illness. But since PMR manifests differently in different people and PMR is only the latin description of the symptoms, many painful muscles, the underlying cause leading to the autoimmune disease that leads to the inflammation that causes the symptoms could be different in different people.

And as Carol also says - you'll be fine! Keep us posted on your progress,

Eileen

Oops - missed the switch off for bold! Still not very user-friendly formatting folks!

Eileen

Hi Eileen,

I put the missing / in

Two other requests in the queue - users able to edit their own posts and more formatting options, hopefully using buttons. This is where coloured text would be useful, bold doesn't really stand out on its own in this case.

Alan

Hi tiggersue, I hope you are starting to feel better. I have the leg stiffness you talk about. That's how my doctor diagnosed me in Jan 2010, because she recognized my description of how my legs felt as being similar to another patient she had, who had PMR. She sent me for blood tests and they pretty much confirmed it. I don't have the tingling or hand problems that you describe--but that might be carpal tunnel or some other issue...we are all different and have various things going on, not all of them are PMR!

I was afraid of prednisone at the beginning, and have had some side effects but as far as I know, nothing too devastating. My GERD was in remission but after I started the pred, it came back. I think the pred may have affected my thyroid, but my doctor doesn't seem to think that it caused me to go slightly hypothyroid. Not sure about that. I had lost weight (14 lbs) before diagnosis because of the inflammation; I gained almost all of it back after a year on pred, but that's because I ate too much. Now I am having trouble getting it off, though.

I discovered a trick for opening jars! Do you have a can opener that has one rounded end and one pointed end? (The U.S. can openers might be different from yours) The pointed end would be for opening cans by puncturing. I use the other end to open jars. I put the little piece which is underneath the rounded "opener" part under the edge of the jar's lid, and that way you can break the seal that makes the jar so hard to open. Hope this makes sense. In other words, you use the rounded end of the opener somewhat the same way you use the sharpened end, except instead of puncturing the jar lid, it just pops the seal open. It does dent the edge of the lid slightly, but that doesn't bother me.

Hope your PMR symptoms are decreasing and you are having an easier time of it. Keep us posted. Also, as EileenH mentioned, the other website is wonderful, too. Both sites are great for support!

freesia