had undetected PMR for about 2 years, no idea what was wrong with me, started lodotra pred 1 week ago, cant believe the differance in me as a person, not only muscle pain but feel alive, appetite a bit better, sweating loads better and myself 100 per cent better, is this normal? I was so worried about taking this medication I take 15mg, would love to hear if this is how it effects most people, guess I should not speak to soon as a week is a very short time.
One of the things many people - including doctors - say is how magical the effect of pred on the patient is. One bit of medical literature descibes the typical PMR patient who drags herself into the consulting room looking pale and ill and totally exhausted - only to return a week or two later almost bouncing into the room. Although many people don't have this 100% turn round it could well be that suddenly they are aware of other niggles that were drowned by the PMR that has probably been going on far longer than they realise.
If doctors saw this change more often they might be more enthusiastic about using pred for PMR. Mind you, I had that effect in 6 hours but when I went back to the consultant he refused to believe the detailed diary I had written about how the symptoms faded and insisted it wasn't PMR, it was some other obscure inflammatory arthritis and he wanted to give me another drug that means you can't go out in the sun - nor does it do anything for PMR. Just as I was moving to Italy!
When I was first diagnosed with PMR I was putonadoseof 40 mg. It was like a miracle, within hours I felt better, my appetite returned and the pain started to lessen.
Slightly euphoric wi
HI Vanessa so glad you finaly got sorted ,follow the guide lines that are on this forum they are the best you can follow give great tips on huw to deal with P M R because you are new to the P M R club it help to knowall you can about this nasty des try to look on Eileens logs she has helped me understand a lot ,good luck on your long journry.
And my energy returned. Other than the enormous appetite and "hamster" chops I had no negative side effects.
Oh Yes! It's like a miracle, isn't it!
I was the same, within hours, an amazing improvenent and then every day better and better. Enthusiasm for life back after months of misery and pain! It's wonderful to feel 'yourself' again. I wa totally elated!
I too was terrified of taking steroids long-term but am a total convert now.... They work! It proves your diagnosis and allows you live again. On this site you will be cautioned not to try to do too much too soon because the illness is still there, but oh it does make you feel good doesn't it?
After 4 weeks on 15mg I was feeling nearly normal and am now at the stage of beginning to reduce them and stay painfree.
You will get masses of advice on this site. Keep in touch because we all experience PMR slightly differently and our response to Prednisone also varies.
I an so happy for you!
thank you to everyone,I have so much to live for, but felt so down,I think I felt worse because I have had 3 knee replacements in the last few years so was used to the pain but not used to feeling all the other th ings that went with it including loss of appetite hot sweats depression and generally feeling not well. Thank you all once again.
Hi Vanessa. It's great to hear you are feeling so much better, I think most of us have had this feeling after starting on pred. It's forums like this that keep us going, they're a brilliant sauce of support and information. Could I ask where you live ? I asked my doctor about lodotra, he'd never heard of it . I'm sure I've said this before but I would like to try it as I have an ongoing stomach problem and think lodotra may be a better option. Good look in the coming months
Lodotra is a delayed release form of pred you take at night. Other than that there is not very much difference between it and enteric coated pred if you have stomach problems.
Lodotra is not approved for use in anything except rheumatoid arthritis in the UK, it is approved in mainland Europe and the USA for use in PMR. Because it isn't commonly used most GPs won't have heard of it. A rheumatologist should know what it is. However it is very expensive compared to ordinary pred: Lodotra costs up to about £100/month compared to up to £4/month for ordinary white non-coated pred, coated pred costs about 30% more. Even if the trials were done and approval sought in the UK it is very unlikely it would be widely available from your GP - it simply is so much more expensive whilst apparently not offering significant other benefits. i.e: ordinary pred does the job, that's what you can have on the NHS. Anyone in the UK who is on it must be being prescribed it on private prescriptions - and that means either you pay for it or have private insurance. It won't make any difference where you live - it is a case of getting a private prescription from someone who is willing to provide it.
But if it is a stomach problem: it is enteric coated you need to try first, that is what it was developed for and it is available on the NHS for patients who struggle with ordinary pred with or without stomach protection medication (omeprazole or ranitidine).
My doctor prescribes Lanzoprazole for protecting your stomach when taking steroids. As far as I am aware they have no negative side effects. I take one 15mg tablet every day.
I do take omaprazole anyway as I already had problems and it is for that reason I am on Lodotra, I do have to pay for it but dont drink or smoke so it is my 25pound a week treat!!!
Some people find the PPIs (omeprazole and lanzoprazole) can cause gastric problems like bloating and diarrhoea, which can be really severe, and there are a few even nastier but luckily rare side effects so they can't take them. Everyone is different. I have never taken them - but used yoghurt as many others do. It works too!
I've had acid reflux and later gerd for over twenty years and seven years ago I had a fundoplication and hiatus hernia repair. I was fine for five years then was put on Rabeprazole as it was the only one I could tolerate the gastroenterologist then discharged me and I was fine untill taking pred.
Diorite making changes to my diet and trying anything suggested I'm still suffering. Then I ended up in hospital with gastritis, can't stop coughing and clearing my throat and keep losing my voice. I'm now waiting for an endoscopy to find out what's gone wrong.
I've never smoked and don't drink and
Sorry I don't know why but couldn't finish. I was going to say I've been taking enteric coated for months. I just wanted to know about the lodotra but looks like I couldn't have it anyway although the money isn't a problem. Thanks anyway I hope you continue to feel good.
Elaine
Hi Eileen, I am PMR Vanessa, my husband has just been told he has spinal wind up, i can not find anything that I can easily understand about this condition, thought you might be able to help?
Sorry Vanessa, not something I know anything about. I would try to find something for you but I'm at ameeting this week so internet access will be a
bit patchy - I'l try to remember though.
thank you for that, had physio today and asked her so now know a little more. Thank you so much for talking about Lodotra, dont know if they are any better than normal preds but am really happy with them, they have changed my life. thank you.
I'm 43. I got put on lanzoprazole for a weak valve at 18. Trained (gym, thai boxing, tae kwondo) never smoked, normal cholesterol and now I've just had to have a stent fitted. Why..... Lanzoprazole...
Hi Vanessa, like yourself had undetected PMR but for about 6 months. The pain and stiffness was so bad I thought I was going to have to get a wheelchair. My gp and myself were going down the route of ME which I have had for 14 years and I also had GCA but again was putting it down to neuralgia. Gp wanted me to go to hospital A&E twice but I was too ill. To cut a long story short a locum dr did my bloods and then rang me at home to verify it was PMR. ESR was 124 it should be below 10 and CRP was 47.8. I was put on 20mg Pred and like yourself I couldn't believe it. I was alive again, enjoying life and not just existing. The absence of pain was fantastic. And then because I had been so ill for so long, I tried to catch up on things. Well take a fools advice, take it easy because I felt good, I did good, but did I pay for it. Just very sick and weak, no pain but was in bed for about 2 or 3 days, so I learned the hard way. I know how you feel, totally elated. Just be careful and the best of luck. You will get lots of advice and support on this site. Its just brilliant. Take care.