i am on 15mg steroid and 2x4 paracetomol each day for pain relief but find that when i have had my last two parcetomol before bedtime i wake up at about 2ish in very severe pains in shoulders and neck and arms and realise that i cant take any more medication till morning
has anybody got any idea what i can take to just get me over this pain barrier
Hi Marilyn,
Perhaps your dosage is not high enough.You shouldn't need to take paracetamol as well as steroids to control the pain of PMR if your dosage is high enough. Are you sure you have PMR? Have you been tested for rheumatism and arthritis as well ?
Best to go back to your GP for an up to date blood test.
I went for various blood tests and my GP diagnosed PMR and automatically put me on 15mg steroid and said that if i was still getting pain inbetween taking this steroid to take paracetomol
I have to go every 3 weeks for blood tests and then following week to my gp for results.
I do have arthritis in my joints hands knees but this pmr is way over being arthritis and is so painful
Hello Marilyn, Would you be able to take a larger dose of steroids??
Or instead of the paracetamol you could try a tramal. Hope you can find some solution to this. What does the Doctor say??
Hi Marilyn, I was diagnosed with PMR 3 weeks ago, I had been in great pain for two weeks before that and had tried paracetamol and difene but got no relief at all. Mg GP prescribed 15mgs pred, however, after a week there was only a small improvement. My dose was then upped to 20mgs and this delivered dramatic results, I'm been on 20mgs for 2 weeks now and I've been 90% improved. It may be that your dose is too low, your GP needs to investigate fiurther.
Best of luck
Liam
Hello Marilyn
How recently have you been diagnosed? If it is in the last week or so then it might just be that the steroids haven't yet got complete control over the inflammation. Whilst some sufferers achieve about 75% relief in their symptoms in just a day or two, others can take up to a couple of weeks to feel the improvement.
Paracetamol did nothing to help my pain pre-diagnosis - far better to take a slightly higher dose of steroids if necessary. Some patients do need a starting dose of 20mgs - weight can be a factor in this.
If you had high ESR and/or CRP blood test markers at diagnosis, then your bloods should be repeated after a week or two on steroids to see if the markers have reduced
Although it is generally recommended to take the whole steroid dose first thing in the morning with breakfast, a few patients have found that splitting their dose, taking the main part in the morning and a smaller dose at night, can help with their night pain and early morning stiffness.
As Blodwyn has said, other conditions such as rheumatoid arthritis should be ruled out before a diagnosis of PMR is given. A blood test to check your Vitamin D levels should also be carried out as any deficiency can cause pain in similar areas to those of PMR. If necessary this can be easilycorrected with a course of of Vit D3.
Something that helped me considerably in my pre-diagnosis days was to lie on top of a duvet to give me extra cushioning to reduce pressure on the muscles/joints - perhaps worth a try for you?
I was diagnosed March 2014 and was put on 15mg of pred daily and was doing okish then in April was taken down to 9mg pred daily then i suffered with an viral infection and my drugs were not being absorbed and then the PMR had a great flare up and a locum doctor put me on 15mg pred straightaway and i also take calcium tablets and i tablet wereby i have to sit for half hour once a week for it to be absorded
i am now on the sick till 22/5 and hope to be able to continue working if this PMR can get under control but at the moment i am in such a lot of pain it is looking unlitely
when i had this flare up easter bank holiday i ended up in a&e and they gave me tramadol but since then i am having 200mg tramquel SR twice a day so i dont know whether i can take an extra tramadol inbetween this dosage but i think i shall have to go back to GP to see if he can up the dosage of pred
thankyou mrso i have had tests for the PMR etc and results did come back with PMR but after reading the replies which i am grateful for i feel that i should go back to my GP and see if my pred can be upted to compensate this pain, if i could just get out of this pain for a while i think i would be feeling better but as you know the pain is sometimes unbareable
i have to lie flat with just one pillow and look up to the ceiling as if i turn to my sides the pain is awful
Marilyn, there are no specific blood tests for PMR. Raised inflammation markers in the blood can be a sign of many illnesses - the ESR can rise if you have flu for instance. PMR is usually diagnosed after excluding other conditions. We have been in touch with others on this site over recent years who have been treated for PMR but after not getting much of an improvement on the steroids have eventually been diagnosed with rheumatoid arthritis.
Yes I agree the pain can be unbearable - undiagnosed and therefore untreated saw me bedbound and travelling to rheumy appointments by ambulance and wheelchair for several months.
f you can get your GP to agree to up the dose to 20mgs, hopefully you will feel an immediate improvement - you could up the dose yourself for a couple of days which could give you an immediate answer. If it was me, that's what I would do.
after reading your comments i have discussed with my hubby and he agrees with you that perhaps over the holiday period i will up my 15mg to 20mg and see how i go from there
i will let you know how that fairs thankyou
Hope it works for you Marilyn, and we look forward to hearing the good news!
Having read the rest - if I understand it correctly, I think this is a case you reduced your pred at a point you shouldn't have been and by far too much. I would try 20mg - if that works, stay on it for at least a month before reducing and don't reduce by more than 2.5mg, i.e to 17.5mg. Stay at that for a month before trying 15mg. If those reductions are too much - go 1mg at a time, it will be a faster reduction in the long run!
If you can't manage 1mg at a time - and some people can't - we have schemes that spread it over long that seem to work for eveyone.
As MrsO has said, if the pred dose is right you shouldn't need other pain-killers, they often don't help in PMR pain anyway, the pred is the pain killer itself.
If at 20mg you still have overnight pain you may be someone where the anit-inflammatory effect of pred is quite short. You could try taking 15mg in the morning and 5mg in the evening - this is something that works for some people and doesn't keep them awake. You COULD try 10mg in the morning and 5mg in the evening - but what is important at first is to get the inflammation under control and if 20mg doesn't do that the chances are it isn't PMR.
Hope you feel better by Tuesday - BH's should be banned!!!!
yes you are right there bank holidays should be band cos when youre going to be ill it happens on a bank holiday it does for me anyway
I have upt my dose now to 20mg i took 15mg this morning and have just had another 5mg so i am waiting to see
it seems that since i have bewen diagnosed with this PMR that my doctor started me off on 15mg pred and then it felt like within weeks he dropped me down to 9mg and ive struggled since, but you have to putr your faith in someone ie doctors and know that they are trying to help but i think with everbody they know their own pain threshhold and mine is pretty low as i dont like not being active so its like a bolt out of the blue for me being ill atall.
i shall report how i am doing later on and thankkyou to all of you for your support it is refreshing that i am not alone. xx
Dropping from 15mg to 9mg in one go was asking for trouble. If this settles down, stay at 20 for a month at least and then ask us for a reduction schmeme that a lot of patients have tried and it works for them all.
You must always remember the pred is only dealing witht he symptoms - you are still suffering from a chronic illness and one of the most important aspects is rest and pacing yourself, never doing too much at one time without a rest. If you do - it'll come back and bite you!
The NE support group has a DVD made to explain it all to patients and their family and friend - it is called "You are not alone". You aren't - there's loads of us who have been there too!
Marilyn - I missed your post to Liam saying that you'd been advised to reduce straight from 15mg to 9mgs as recently as March as I was replying to you at the same time (well done for spotting that Eileen!) There is the answer for your pain. Why or why do GPs not read their papers and treat their patients accordingly rather than inflict unnecessary pain? There are some illnesses, such as Asthma, where short term steroids are prescribed and reduced to zero over about 6 weeks, whereas PMR is a long term condition needing steroid treatment long term. A few lucky people have textbook journeys down through the doses and manage to get off them in 12-18 months but for the majority it takes at least two years and for some even longer.
Apart from reducing the steroids slowly, one of the best bits of advice those of us can offer from our experience is to learn to pace yourself, and not overdo things on a good day or PMR will come back to bite. This is an illness for which there is no cure - the steroids are just damping down the inflammation that causes the pain. PMR goes into remission when it wants to and not when we (or the Dr!) want it to.
You mentioned in your post to Liam about taking a tablet once a week - this is probably Alendronic Acid for bone protection? Unless you are already suffering from Osteoporosis, before GPs prescribe this drug alongside the steroids they should arrange for you to have a DEXA (bone density) scan to check for bone thinning. If the DEXA is normal, you really don't need the drug with its risk of side effects. The calcium plus Vit D you are taking should be sufficient, together with a diet containing oily fish and plenty of calcium-rich foods.
I'm so sorry this is probably becoming a rather lengthy post, so I'll stop boring you now and hope that at least it is helpful.
Hi Marilyn,
I have just read the latest reply from MrsO and I endorse every word she says.I have found that GPs can't wait to reduce your dose regardless of the effect it has on you.
I was diagnosed with type 2 diabetes 2 months after my PMR diagnosis and was persuaded to stop the pred immediately with disastrous results.I made the decision to re-start the pred myself and was then given the go-ahead by another GP as my original GP had left the practice.I'm now more or less pain free again.
Good Luck.
I am grateful to all of you for your advise and have now put myself on a regime of 20mg of pred a day and hopefully i shall have a lot more relief we shall see
i will report back when i have given this time to work
thankyou for all your advise one and all
hi mrso there was some query to begin with when i first went onto this forum as to whether or not i had actually got PMR but after reading carefully all the symptons on the net and my doctors confirmation that i have indeed got this PMR then i then had faith as to what my doctor was advising me to do, the only concern that i have now at the moment is that although blood tests dont show PMR they do know whether or not you have this by levels etc. MY doctor has not gone into depth with me with regards this PMR and i just though that as he said this will go on for up to two years and these are the steroids and we will decrease them as to what the blood results show
with me now taking a higher dose (20mg) instead of 15mg will this show on my blood test results or do i just tell my doctor that i put myself up to 20mg of pred due to the pain i am in, im not sure what to do about this
Just because the blood tests are back to "normal" does not mean you can reduce the pred willy nilly. The reduction should be done in line with symptoms - because sometimes you can have symptoms but the blood results lag behind, sometimes they don't go back up again.
However, when you start the patient on pred, the best way to go about it is reducing with a scheme but SLOWLY! You are looking for the lowest dose that controls the symptoms. It might be 10mg, it might be 6mg, or it might be 12mg to start with.
One group gives 15mg for 6 weeks, then 12.5mg for 6 weeks and then puts the patient onto 10mg for a year. Using this they get flares in 1 in 5 patients - other schemes lead to flares in 3 in 5, much higher. We think if you go even slower at first you'll get even fewer flares - which is good. You should certainly never reduce according to a schedule if a blood test is raised - but you can't work the other way round and say you can reduce a lot because the blood test is normal. You don't know at what stage the borderline will appear - you might be fine at 15 and fine at 11 but not at 10. If you jump down the doses you will have missed that and think you have to stick at 15 to be OK. By creeping down you find that at 11 you feel great but at 10 you don't - a whole 4mg less.
If you feel good in a few days on 20mg you can go back to the doctor and tell him what you have done and that you want to reduce slowly the next time please. It is how you FEEL that is most important and it is almost certainly the big drop that caused the pain to come back. If you reduce very slowly it is less important what the blood tests show - the raised ESR and CRP blood tests just show there is inflammation somewhere and the level should fall quite quickly if you are on pred. That makes it difficult to say "yes, you can drop x mg". It is better to say "we'll try 1mg less and see how you get on", staying on the new lower dose for a few weeks. If you feel fine - try another 1mg. If you have a wobble then maybe it's worth checking the bloods again - but they should never be the final word as they aren't very reliable. I was at a PMR research meeting the other night and a consultant rheumy was jumping up and down about the doctors who trust implicitly in the "blood tests" - he never looks at them!