Newly diagnosed

Posted , 8 users are following.

Hi everyone, I have been diagnosed for approx 7 weeks, and am on 15mg of Predisinole. Originally I went to my GP for my arthritis which had got quite unbearable, particullarly in my lower back and hands, prior to this I had started to get pains in my upper arms and shoulders. Hence my GP's investigations and diagnosis of PMR. The first few weeks were like magic, all my aches and pains dissappeared, I was cut down to 12.5mg, but had to go back to 15mg, as I was getting twinges again. Now I am back with my original back pain, which I think needs investigating. (What does anyone else out there think?). I have no doubt that I have got PMR, I have terrific night sweats which are awful. From what I have read about this it doesn't seem very good. My GP is wanting to put me on a tablet for Osteoperosis, but having read all the info on this, the side effects are putting me off. Really could do with advice and feedback please.

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  • Posted

    Hi, First off I would have not dropped from 15 to 12.5 but it's worth asking the GP to prescribe 1 mg Preds and just reduce down to 14 or 14.5mg for about a month and then drop another 1mg or half mg etc.  There will be 'effects' so do it slowly - this is the only way, don't be to keen to reduce too quickly.  I'm assuming the Dr has prescribed calcium tabs,  Omeprazole and Alendronic Acid?  These are to counter Osteoporosis and ulcers.  Bottom line is you can't just stop the Preds and the Preds have side effects but these reduce when you get to the maintaintance dose of around 5 - 8 mg.  It the long haul that most people don't like but we all have to live with that!  Best of luck.
    • Posted

      Hi, Thanks very much for your reply, the drop from 15mg, to 12.5 was suggested by my GP, and from all my tests etc: and her having to get second opinions of these tests all suggest she hasn't had to deal with this before, and no Alendronic Acid hasn't been suggested, but I am on Lanzaprole which is a stomach protector. Once again many thanks.
  • Posted

    If you follow this link

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    you will find links to other sitrs wher eyou will find a lot of info from other people with PMR and from doctors too. 

    At a guess you didn't tolerate the 2.5mg drop in dose - especially if you went from every day 15 to every day 12.5 straight off. In the thread that link takes you to there is a reduction scheme in posts 4 and 5 where you spread 1mg drops over a few weeks and the explanation of why is also there. 

    You may not achieve total freedom from pain - by no means everyone does and the aim is to manage the symptoms to allow a reasonable quality of life. I don't quite understand what you mean about "from what I have read (the night sweats) are not very good". One cause of night sweats is cancer - and that is why your gP should have done various tests for that before saying it is PMR - but your response to pred is fairly much confirmation it IS PMR. The night sweats are part of the autoimmune part of PMR but can also be caused by pred - or even both. They do improve usually as time goes on and with a lower dose of pred.

    The back pain could be something called myofascial pain syndrome (mps) which it is now being realised often occurs alongside PMR - there are posts on here and on the other PMR forums about it. A good physio or sports massage therapist can help there - and many of us have derived a lot of benefit from Bowen therapy. Cortisone injections into the trigger points found in mps also work well but I don't know how easy it is to get it in the UK. 

    Tell your GP you want a dexascan to see what your current bone density is like - if it is low then you need more than just the calcium and vit D supplement tablets he should already have given you. I have only eveer taken them, never any of the others and my bone density was unchanged after three and a half years on pred most of the time above 10mg. Only about half of patients on pred develop osteoporosis and many of them would have done anyway. But you are right - the downsides of alendronic acid are unpleasant and it isn't always essential. I do not believe any of these medications should be given "just in case" - because you shouldn't take it for more than 5 years without a break anyway. Whatever the drug company says it is NOT something you can take for the rest of your life with no risks. The same applies to omeprazole which is often handed out alongside pred. There are other medications available - including enteric coated pred (coloured pills not white tablets), Zantac and even using yoghurt which has prevented a lot of people from having stomach problems when they couldn't take the omeprazole. 

    But go and have a read of the links I have given you - and then ask more targeted questions. I could write all day on "advice and feedback"!

    • Posted

      Good afternoon Eileen,

      I have been reading all the discussions regarding PMR which I have had for nearly a year, and thankfully I do not have the terrible problems that other people have to suffer.

      I have aches in my shoulders and arms (not pain), but most of all is the fact that I am terribly tired all the time. When I do a simple thing like make a cup of coffee, I have to sit down afterwards. My friends comment on the fact that I always look exhausted, and never go out. I sleep well at night, and get up feeling well and quite energetic, but within half an hour I am back sitting down with  no energy. I have had headaches lately which have now thankfully have gone away, but my eyes are still red and tired. I turned 70 yesterday, and feel like over 100!

      Is there a tonic I can take to make me feel energetic?

      Regards,

      Grace

    • Posted

      Hello Grace, have you been back to your doctor and told him what you have just told us?  You ought to.
    • Posted

      mrsmop is absolutely right - you need to go back to your doctor. You haven't said what dose you are down to but if you have aches in your shoulders and arms it suggests you might not be on a high enough dose to control the symptoms. Your mention of headaches bothers me a bit too even if you say they have gone away - where were they and what were they like?

      Funny - someone asked about a tonic for more energy a few weeks ago: no, I'm sorry, there isn't a magic cure, whatever they used to say about Sanatogen! You do need to be checked for anaemia and your blood pressure too as well as other blood tests - there are many causes of fatigue, not least PMR of course, and the pred doesn't do anything about the autoimmune disorder fatigue in PMR.

      As I keep saying: having PMR doesn't excuse you from having other illnesses and if you didn't have PMR I'm sure you would have been back to the doctor long ago!

    • Posted

      EileenH

      You seem to have some very good advice to follow. Could you help me further? I am having difficulty with my osophogus, (dont think Iv'e spelt that one right). I have a terrible amount of wind, and keep waking up with terrible heartburn. I feel things are not at all right with my throat and swallowing. Also my eyes can feel really tired and sore. Can you advise me? Is this part and parcel of this PMR?

      Thanks,

      I am thinking of going back to my GP, as I am quite worried.

    • Posted

      Pred can cause stomach problems - that's why many doctors hand out "stomach protection" automatically. However - some people don't get on with the PPIs and the lansoprazole you are on is a PPI (proton pump inhibitor). That can cause awful wind problems - and if you are taking it and still getting heartburn it would appear not to be working.

      I had sore eyes with PMR - there is another autoimmune problem called Sjogren's syndrome that often appears too and causes dry eyes. Ask your doctor for artificial tears which should soothe it - it is caused by your tears being "poor quality" and thin so the eye makes far more to try to make up and your eyes water. The artificial tears are thicker, sort of a gel, and moisten the surface of the eye.

      If you are having these stomach problems though you must not take alendronic acid or any of its relatives until it is sorted out what is causing it - be quite firm with your GP. And yes, you should go back to your GP. He's paid to look after you - you are his "employer" in some ways!

    • Posted

      Gladioli,  Eileen is very helpful and knowledgeable. I am just adding what has helped me with these stomach problems.  Actually eating an apple (organic if possible) at night has been helping my esophagus.  Apple contains Malic Acid and seems to calm down the area. Also taking 200 mg Magnesium Citrate not Oxide... is relaxing at night. 

      I use "Refresh Plus" eye drops in the little ampules for dry eyes which has helped me.  All these problems connected with an Auto Immune disease... Hope, this helps a little.

      Erika

       

    • Posted

      Hi Eileen

      After an appointment with my doctor last week she has started me on a reduction scheme and asked if I could cut the 5mg in half. You mention reducing by 1mg sometimes, as you can imagine the pills would just crumble to dust, do the Pred come in 1mg measures?

      Also it has been mentioned that some people have been prescribed vitamin D, calcium etc, I have not been offered these, is there anything else apart from the stomach tabs I should be taking?

    • Posted

      First of all, if you are taking enteric coated pred then these pills (red or borwn ones) MUST NOT BE CUT.

      If you are in the UK, yes, pred comes in 1mg as well. You don't say what dose you are on before reducing - but if it is for PMR and under 20mg, then 2.5mg is too much at one go. A reduction should never be more than 10% of the current dose, so at 15mg that would be 1.5mg and so 1mg at a time would be better and more likely to work. Cutting the fiddly little pred tablets is totally unnecessary - though no doubt she is trying to save money in her practice budget! You can get a pill cutter from any chemist but with small tablets it is difficult and they crumble and break unevenly so you aren't getting the right dose anyway

      Yes - you should be sent for a dexascan to see what your bone density is at the moment and you should be taking calcium and vit D supplements - the tablets are 400 IU vit D and 600mg calcium and you take 2 a day. If the dexascan were to show reduced bone density you might need other tablets.  

    • Posted

      Hi Eileen

      I am taking 15mg white tabs, I started on this dose then because I was getting worse, it was doubled, then reduced down to 20mg, and now on 15mg all within the last three months. My doctor wants me to reduce down again to 12.5mg in the next couple of weeks by cutting the tabs in half, but they crumble to dust, so now I know that they come in 1mg I will ask for this at the pharmacy when requesting my repeat prescription.

      Thank you for your reply

    • Posted

      Eileen and gladioli ~

      speaking of sjogren's, I was dx'd with that a few years back.  My eyes were so dry that the lids stuck to the eyeball when I woke up,plus they were extremly swollen.  My throat was always sore and raspy.  With sjogrens I was given special lenses to put in like a contact, only larger by far.  These lenses are called prose lenses. The doctor sent me to a specialist to teach me how to use these lenses and it's very intensive.  They are large, hard and extremly helpful!  Like contacts, there is a fluid placed inside the lens and it helps for about 8 hours.  You cannot sleep in them but 8 hours is a good deal!  They said after 8 hours give your eyes a rest for about 2 then start all over.

      I know this thread wasn't on sjogren's but Eileen mentioned it and it peaked my interest.  The drops I use when not using the lenses is a liquigel (refresh) and at nighttime, I use an ointment (refresh).  Both are free from preservatives.

      And now, I'm headed to the sjorgen's thread!

       

  • Posted

    Hi Gladioli,

    I know.....12.5 mg does not cut it....try to split it and take 5 mg at night and 10 mg in the morning.  You could do the same with 5 mg at night with food!!, and 10 mg in the morning with breakfast.  It helped me for a month....until I tried to cut it to 12.5 mg.  I was back having PAIN just these last 3 days. 

    I would not take the tablet for Osteoporosis your doctor wants you to take, but instead take Calcium with Magnesium and VITAMIN D (very important) because Prednisone takes it out of your system.

    All the best,

    Erika

    • Posted

      Thanks Erika,

      Will try splitting the doses, Grateful for your advice on the tab for Osteoporosis which I'm not too keen to take. Will have to get some Calcium with magnesium and try those, as drinking milk does not agree with my stomach.

      Thanks again.

    • Posted

      You should have been given calcium and vit D by your doctor - if you are in the UK you can have it on prescription as the dose needed is higher than most supplements you buy in the shops. 

      I'm afraid I disagree on splitting the dose at the moment - although it may work for some people I suspect you are suffering because of trying to reduce too fast, or at least in too big a step. Taking the dose in one gives the best antiinflammatory result and the fewest side effects. You also need to take it as early in the morning as possible - not waiting until a 9am breakfast for example. A lot of people who wake early take a drink and a sandwich or yoghurt to bed with them and take it as soon as they wake before having another snooze before getting up - the pred is into their system and working within a couple of hours. Many people also found using an electric blanket BEFORE getting out of bed warmed their muscles up enough to give them a good start - once you are able to get moving the blood supply to the muscles improves and so does the stiffness. A warm shower is also a good help, especially is you do a few gentle stretches during it - careful, don't fall over!

      Others find taking the whole dose late at night before going to bed avoids many of the side effects, especially if the pred makes them feel wobbly which is a quite common complaint. Taking it late at night allows the nasties to happen during the night while they are asleep. The absolutely best time to take ordinary white pred is at 2am and I do know one lady who did that, especially at the lower doses, and found it helped a lot. Not sure that everyone wants to wake then though!

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