Hi, I could really hug you, I have not lost weight as I only want to eat carbs, have not touched meat or veg for a long time and only want sweet things not like me, so now I am absalutely sure I have PML, thank you so much for talking for me today
Sorry about the last time I wrote and saying PML, dont know where that came from, I had written you a long reply but it got lost somewhere, I think because it took so long for anyone to even mention PMR and because I had not heard of anyone only wanting to eat carbs and the depression then I really thought I had someother illness, that is the reason I said I could hug you, suddenly I know that I must really have PMR and just want to get on with the treatment, was also suprised that you said you had been on 3 different types of preds, which one put on the least amount of Weight. Thank you so much for all your help, I live in he New Forest and dont think we have any help groups near me.
Oh - I think there are help groups within striking distance of the New Forest! There is certainly an informal one there - a group of a few ladies who meet for coffee occasionally. I suppose it depends what you call striking distance I suppose - but for once every 2 months is Chertsey too far? People come from South Wales for that one!
Losing a post is common - if I have done a big one I try to remember to block it and copy it before pressing submit! Saves the heartache!
In the UK you won't get the pred I've lost weight on - it is too expensive although it is approved for use in RA. There is meant to be a trial using it in PMR but it hasn't got off the ground yet.
is the pred you are talking about methylpred, as you mentioned that you were on that and I looked it up but am sure it said it could take 10 years off your life expectancy so that worried me as am just a young 70!!! and already overweight, would be interested in the trial.
think I got it wrong about taking 10 years off your life , looked up another that I read about and that it what it said, please dont worry as am sure I got it wrong.
No not methyl pred - that was horrible. It is the standard pred used here in the Italian healthcare system, ordianry prednisolone as used in the UK isn't available, and I put on loads of weight and developed a lovely beard! It also didn't work well for me! The one I can have here is called Lodotra and is taken at night. It was hoped a trial would start soon but as far as I know the whole approval process hasn't started yet so it is still some years off for recruiting.
If you follow this link to another post on this site (just click on it):
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find links to the PMRGCAUK northeast support group site and to their associated forum. There you will find loads more ladies in the south of England with PMR and on the parent site there is a list of where there are support groups. If there isn't yet one in your area you can ask on the forum and find out if there are other people who'd like to meet, formally or informally. Setting up a group takes a lot of work and isn't cheap but having coffee together and chatting is easy and cheap enough.
Hi, thank you for that, guess you live in Italy, I have looked up Lodotra and see that you can get it in the Uk but a lot more expensive than other predsif I could be perscribed them privately would you recomend them,please let me know your thoughts. Thank You.
Yes, I live in the north, the German speaking part of Italy, up in the mountains, about an hour and a half from Innsbruck in Austria which is really our nearest big city.
I'm not sure what they cost in the UK, the price here means it would cost up to about 80 euros a month. They come in 1,2 and 5mg tablets for combining to get the right dose while reducing as they can't be cut. They can be had in the UK for morning stiffness in RA but I have no idea whether they are used regularly. I think they are brilliant personally. Since they are coated tablets and they will be absorbed further down the gut you shouldn't need omeprazole - I've never taken it, never been offered it really but they don't use a lot of things here, not until they are needed. As soon as I started taking them I did start to lose weight, quite slowly but it was definitely going from round my midriff. The hope is that it will be found to cause fewer side-effects - it does for me.
Hi Eileen, I'm new to PMR diagnosed within the last few months, since then my urine has become a little darker first thing in the mornings and it has a stronger odour!! If anyone else has a similar problem I'd like to hear from you.
Andrea, Prednisolone has a very long list of potential side effects but your dark urine may simply be a case of you not drinking sufficient water and showing some signs of dehydration, particularly as you only seem to be experiencing this at the start of the day. The steroids can also cause a rise in blood sugar, so do take a urine sample to your GP to check that you are not showing signs of diabetes. Importantly though, do drink plenty of water to flush that urine through.
Hi Andrea, I was diagnosed 6 months ago, but believe I had it for 2 years, My urine smell changed as did my body odour also went off certain types of food, my doctor thought I was very strange, it was something that really worried me, however have been on Lodotra, a form of pred that I have to pay for, my pain has almost disappeared but the odour and eating did not go away, I am currently on ten dropping to 9 pred, however last month I had a bad tooth absess and was overdosed with amoxacillian antibiotic , it affected my liver, hopefully all better now but strangely enough my body odour has gone and am eating a bit better, dont know why but am seeing rheumy in 2 weeks so hopefully he will have some answers. good luck
Quite a few people have mentioned similar changes, including me - whether it is PMR or pred is difficult to tell.
Providing your urine goes back to light in colour there isn't too much to worry about. MrsO mentions diabetes - contrary to general belief, if there is sugar in your urine it would mean your blood sugar level was VERY high and the excess was spilling out through the kidneys. A fasting blood test and measuring the Hba1c is a much better indicator and your GP should be doing that every few months anyway.
Thank you for that advice Eileen, I will see how it goes for a few weeks then see the doctor about it!
Thank you Vanessa, yes I think my body odour has changed too, I put that down to being in peri menopause, but it's more than likely it's PMR!!
Thank you MrsO, I think I will get that checked out!
Hello and thank you for sharing so lmuch information about PMR. I was diagnosed 3 monlths ago started at 40 and am now down to 10 and next week it will be 9 of prednisone. I am particularly interested in the issue with glaucoma and cataracts; i am due for my eye exam and was not sure how the pred. in my system would show up in the exam.
I have been very healthy all lmy life and this diagnosis has me thrown for a loop. Having weight proplems all mly adult years, it has gotten so much worse. In researching this aspect of the PMR it is recommended to stay on an anti-inflammatory diet; i will be easing myself into this soon. Problem is, i am depressed about the diagnosis and the carbs and fats sooth me.
Something i have not seen addressed on the blog is the connection between stress and the onset. This has been my experience, years of stress caring for a sibling and then the death of that sibling about the time of the diagnosis....
i look forward to catching up with each of you for mutual support.
Hello margo, yes many PMR/GCA patients have mentioned experiencing a period of severe stress prior to their diagnosis and, in fact, I have just replied to someone on another PMR forum who has said that she was diagnosed following a year of grief. In the absence of a known cause for these diseases, stress does seem to be very high on the list of possible triggers.
Feeling "depressed" bout the diagnosis is not at all unusual and, in fact, tboth the inflammation lurking through your body and the steroids themselves can add to that feeling. I can so understand that carbs and fats can "sooth", but do try and avoid all the refined carbs such as in white bread and white potatotes which just turn to sugar in our bodies and add to the risk of steroid-induced weight gain. Substitute with sweet potatoes and wholegrain bread, pasta, rice etc.
I am being treated for glaucoma (my cataracts are stable but being monitored), and my ophthalmologist has never mentioned Pred ever being shown up in an eye examination. However, it is possible to see if GCA is showing in the optic nerve. So very worthwhile having eye checks.
It sounds as though you are doing very well if you have managed to reduce successfully from 40mg down to 10mgs in just 3 months. A big word of warning here, however: now that you are down to 10mgs, you will need to really slow the reductions down. Reductions from this level should be no more than 10% at a time, otherwise you will risk passing/missing the point at where the inflammation may not be controlled by the new dose. I can elaborate more on that if necessary.
Hi hope you are doing well. I have a question after finally being able to write again. Had to put in new password several times. I have a husband with a form of Parkinson's and now has a urinary catheter and thinks that means he is abed bound patient. I was recently diagnosed with PMR again after being in remission about 2 years. My question is how much activity should I push myself to do. The last time I was still struggling to cook,clean,and everything else and was trying to walk on hips with a vascular necrosis due to Prednisone. Gp nor rheumy noticed this.,went to a separate back surgeon who could tell by my gait. This time I have both hips and one knee replaced but recently cracked or bruised a rib cleaning tub. Did not fall just pushed hard. How do I know how much activity is enough or would detrimental. I keep besting my self up for not getting more done in house but I don' t want any recovery slowed because I should rest more. Sometimes it is all I can do to stand 4-10 minutes. Pain is around hips,buttocks, lower back,and left shoulder.cno help from husband and little from son who lives here.
The only way you can tell how much you can mange is by trying - but it sounds as if housework is as much a no-no as it is for me. I couldn't even THINK about cleaning a bath tub! Have you been checked for osteoporosis with a dexascan? Being on pred sometimes doesn't do our bones much good - it hasn't affected me at all but a broken rib just while cleaning the bath sounds suspicious.
If you can manage to afford it I would also suggest you look for a Bowen therapist locally - it may be that a couple of sessions would help the low back and hip/buttock pain. It is something that often happens alongside PMR but responds better to more targetted treatment. You can access Bowen without having to persuade a doctor and I'm sure some f the ladies (and now a gentleman) who have benefitted a lot from it will support me.
And whilst I have a lot of sympathy for your husband - having a catheter doesn't mean he has to stay in bed and leaving everything to you. You need to get someone to talk to him and explain that you, too, have a problem and need help. If you can afford it - a cleaner at the very least.
I tried to make my email short but left out some data. I took Fosamax as Kong as I was allowed as bad stopped last year. Last dexa scan Wes above normal bone density,but I agree something should not have popped in my side and a week later still painful. I am almost 68 and my husband is 77. He has some dementia but I agree he should be more active. I think he just gave up with the diagnosis of PD and is waiting to die. He has had rehab but won't do exercises at home. He walks with walker --used to be a cane.I live in NC USA so far no one has heard of Bowen therapy. Thank you will try to get a cleaner.Pat