Diagnosed in February. Learning how to balance en... - PMRGCAuk
Diagnosed in February. Learning how to balance energy with rest. Anyone know how many months the morning stiffness and soreness continues?
Hi Janimaths. Welcome to the site. It would seem everyone has a different pattern of recovery due to ones reaction to steroids,age, lifestyle ect. The list and variables are endless. Just try to stay positive, be guided by your rhumertogist, try to make something of everyday. I have had both conditions for two years and for past two months have been pain free which is great, but the fatigue is still there. Im on 4mg I'm more active now, but still careful, try to sidestep stress and getting too tired, I'd be out sitting in the sun if there was any! Keep in touch with this site for help and support. All best wishes Mossie
Thanks for your reply. I have a new friend who was diagnosed same time as I had been. She is now playing 10 holes of golf..! but once a week. I am about to attend a NHS pain clinic. In truth the pain is sometimes awful and at times not too bad, and I can count on it being away around noon to 2pm and enjoy the rest of the day. I have always been active at sport and finding that its difficult at times getting into the water to swim is disappointing, but at other times its alright. But I don't swim far. So it seems that I might experience pain for quite a while. I'm alive and well except for PMR and must be grateful. Thank you again.
Hi Janimaths,
It would be interesting to know what you were prescribed to treat PMR, prednisolone I presume, and at what dose, and what dosage you are on now. I am thinking that 4 months on your symptoms are still troubling you. Is there no improvement?
We are all different in our experiences with PMR. I had dramatic relief from symptoms with 30mgs of pred. and found that the pain and stiffness returned to a lesser degree after 20mgs. I could only drop by 1mg at a time in every 2 weeks. The pain would flare for a few days then gradually diminish.
I found that my energy levels were quite low on the medium doses (between 20mgs and 10mgs). The one thing that was said to me over and over again was to pace myself and listen to my body. It takes quite a while to get the hang of this. Sometimes it used to feel as if all the life was draining out of me. If you feel the same then you must get rest as quickly as possible. Get into your favourite chair with your feet up, or if it's really bad go to bed. A cup of tea and a bite to eat also helped me. If you're having a bad day only do what you really have to.
After 18 months, during which I have had one relapse, I am now on 7.5mgs and feel much better. Energy levels up, weight down. I have quite a strict diet and avoid certain foods. I drink lots of water and take quite a few suppliments. This works for me.
Pats.
Hello. Thank you and I agree with all of your very good advice and am trying to keep from feeling that I am ravenous and must eat. Yes, there is some improvement in pain levels, which were pretty commanding at first. However, most mornings I experience some pain/stiffness on waking which disappears around noon to 2pm and am disapppointed that my right arm began to give pain 4 months after diagnosis. I thought the shoulders, neck and hip joints were what I was given as my 'lot'. Clearly not. I am intrigued that there are so many fluctuations, on medical advice, in the amount of prednisolone prescribed. I have a rheumatologists hospital protocal printed out for me. Started at 15mgs steroid, with dramatic results in pain disappearing, then soon after down to 10 when some pain reappeared, and like you, to a lesser degree. Seems as though I am on exactly half of your dose. I am now on 10 then 7.5 on alternate days and will shortly be on 7.5 daily for 2 months and decreasing from there. I have a friend who was on the same protocal and who states she was free of PMR in 18 months. I am for the most part over - hopefully as of 3/4 weeks ago - the total exhaustion and also my headache has gone, so all in all, now realising that things really are getting better. Even the arm pain seems to have diminished these past 3 days. Wish I could stop wanting to eat chocolate and Daim bars though...which I give in to. As I am on 20mgs rosuvastatin the consultant suggested I stop taking it to see if there was an improvement in pain levels. I think he may have something there. I have only been off it for 3 days and detect a difference, small but certain. I think I may have to be prepared for not being pain free for another year possibly, but its getting better. Thank you for your reply.
Hi. Sounds as though you are getting really good at listening to your body! The truth is that we all have different stories to tell with PMR and some people simply don't get it as badly as others do. So I won't add too much to what has already been said except to mention that a drop from 10mg to 7.5mg is a really BIG drop, 25%. Pred is also available in 1mg tablets and many people find it easier to drop 1mg at a time. Once you are ready to reduce from 7.5 I would definitely discuss with the doc whether you could go down to 6 or even 7 before dropping to 5. I have a friend too who is more or less free of the PMR after just under 2 years and has never complained much about it. I had it for a lot longer and was sometimes crippled by it. I think she must have wondered what I was making all the fuss about. And if you had asked me which one had the higher pain threshold before we started, I would have said me, no contest. So it's just the luck of the draw.
Thanks for your reply. The way my consultant rheumatologist lowers the dose of the pred is 10 one day, 7.5 the next, then back to 10 then 7.5 and so on for 2 months. So really it works out at around about 9 mgs over each 24 hours, with a slight variation from one day to the next - a 1mg drop but delivered a little differently. And after 2 months on daily 7.5 ( a drop of 1.5) again there is a 'staggered' drop i.e. one day at 7.5, the next at 5, so a total of 12.5mgs over 48 hours or 6.25 mgs each day, in other words a drop from 7.5 to 6.25 for another 2 months etc., until by June 2013 I will be down fairly low. I prefer it this way instead of fiddling away at maybe one 5 mg pill plus 4 small 1 mg pills - fewer to count overall into the dose box. I keep in close touch with the NHS consultant and am being seen every 3 months. I am fascinated by people's descriptions of their very varied steroid doses which I think indicates how precious this drug is and how much we depend on it. Much of the 'talk' it would appear is about prednisolone. Also fascinated by the quite large variations in the way different doctors prescribe the dosage, even though they have all read the most recent research papers on it, hopefully. I have great faith in them, and have been shown kindness and expertise by NHS staff. I would love it if someone could advise me where to read about non inflammatory foods and how to stop eating sugar - short of sewing my lips up in the evenings! Thanks again.
Hi Janimaths,
One thing that you have said has hit me hard! SUGAR. We all have to get to grips with that one - big time. Pred. greatly reduces your body's ability to deal with both salt and sugar. I'm really sorry to remind you, but do you want the meds. to push up your blood pressure, and put you at much greater risk of getting diabetes. As normal, healthy people, most of us eat far too much salt (higher blood pressure) and refined sugar which can cause diabetes. We are now at even greater risk of getting these conditions. I have used Canderel as an alternative sweetener for years and, although I love chocolate, I have stopped eating it, apart from unsweetened cooking chocolate as a drink which I sweeten with, you've guessed it. Unrefined sugar which is found naturally in fruit etc. is O.K. I'm so sorry to be such a "kill joy", but I have to say this - Your adrenals, which knew how to multi task so well, are asleep, and all you have is pred. which is a very powerful form of anti-inflammitory, no more.
Yes, you're right, we have to depend on pred. for the most part. But this is a serious game we're playing. We can't pick and choose if we want to get well again. The pred. also causes side effects, and sometimes it's hard to know - is it the pred. or the PMR.
If you look back to my previous blog you will see how my rheumy suggested I dropped the pred. She left the drops to me after 20mgs. I am now on 7.5mgs. Next week I will go to 7mgs and for quite a while afterwards I will get pain and lethargy. I will have to ride it out and take a couple of ibuprofen as well if I can't cope.
It looks as if you are on statins. From what I've read, these drugs can cause inflammation so you might be better off them.
There are many web sites on line that offer advice about natural anti-inflammitories and also natural drugs to drop blood pressure. I have a list of some in my kitchen and use them as and when.
I guess from what I have said I must come across as some sort of control freak. Don't believe it. I have my weaknesses. Red wine, ice cream, full fat cheese etc. etc. But I try to keep it under control. I really want my body back!!!!!!!!!!!!!!!
It's very hard at first. Hang on in there. It gets better.
Pats. p.s. No needles.
Got to ask, are you ok taking the ibuprofen? It clearly states on the pred leaflet not to. Just wondering cos on bad days I have to stop myself taking it with the pred.
Also I would like to see your list of natural anti-inflammatories if possible.
Hi Sue,
Now you're going to have to forgive me for this. I've been looking back at the questions you have asked me over the past couple of months that I have not answered there and then. I have come across 3 from you - 1 Why do I sometimes take ibuprofen? Well I guess you know the answer to that now as you yourself are given extra pain killers to help with the drops in pred etc. 2 What is "Burn Out" . I know that you've found the answer to that yourself lately. And last but not least, could I let you have a list of some of the natural anti inflammitories I have discovered. If you are still interested then here they are:-
BASIL
BASMATI RICE
BLACK PEPPER
CAYENNE PEPPER
CHIVES
CHILLI PEPPER
CINNAMON
CURRY POWDER-a little will do if you can't take much
EXTRA VIRGIN OLIVE OIL
DARK CHOCOLATE- the darker the better
FISH AND ALL SEA FOOD - Omega 3 fatty acids
FRUIT AND VEGES, but avoid tomatoes, peppers and aubergines which can cause inflammation.
GARLIC
GINGER - very good
NUTMEG
PARSLEY
ROSEMARY
THYME
TURMERIC - very good
I'm sure there are many more, but I use most of these quite a lot.
Please forgive me for the delay, but on some days I get so many E mails that it takes me ages to go through them.
Pats.
I found that the pain and stiffness disappeared as soon as the 20mg of pred kicked in. I felt marvellous. With the gradual reduction, aches and pains and fatigue have come back, but nothing acute and I am now going down to 5 one day, 6 the next with a view to dropping to 5 in a few weeks. I have never been to a rheumatologist but our local GPS are well informed and are prepared to trust my judgement about my reactions to pred and my needs for more or less.
Hi everyone
I was diagnosed with PMR just over a year ago. I started on 15mg of predisolone and it dealt with the pain as if by magic in about a week. Since then I have tried to reduce the dose and went too fast and had a relapse and skin rashes in September/October and was back up to 15 mg. I have since reduced to 7 mg and am about to go 7/6 every other day. I feel I must take it very slowly to avoid relapse recurrence. I am still very stiff and sore in the mornings but find a hot bath helps. My energy level is still slow but I do feel better on less steroids- less cramp in the night, fewer extreme hunger pangs and more focussed mentally and able to push myself towards gentle exercise physically. I have now accepted that I am in this for the long haul and try not to get frustrated by the lack of energy I have (I always had lots until this came along) .
I have found it very helpful to read experiences of others and see that everyone is different and that listening to your body is what is needed with this. My GP is sympathetic to this approach.
One thing I would like to ask do others have swollen ankles witth these steroids? Mine swell within half an hour of being out of bed and I hate the fact that I haven't been able to wear skirts or even many of my shoes for the past year.
Best
Anne
Hi Anness. The last question you asked regarding swollen ankles. My lower legs used to swell when I was on the high to medium doses (between 30mgs and about 15mgs), caused by the pred. I believe this happened because pred. reduced my body's ability to get rid of salt and sugar which occur naturally in many foods. I found that eating added salt and refined sugar to my diet made the problem even worse. I made many adjustments to my diet to avoid salt and sugar. It was not always easy, but helped a lot. My heart and kidney tests were good, therefore the fluid retention was caused mainly by my diet.
I must say that I could not cope with the steroid drops you are on at the moment. I am only coming down half a mg in every three weeks, but I get out of bed in the morning with no pain or stiffness. Next week I'm hoping to drop to 7mgs from 7.5mgs. I still get the so called "burn out", but I believe that is a side effect of pred. Not caused by PMR.
Pats.
Hi Pats, what do you mean by "burn outs"????
