I have now been suffering from PMR for nearly 4 years and have found this site really helpful over the last few months ( only just discovered it). Having moved from 20mg to 5mg over the period I am now at the stage of thinking I may have to increase the dosage. I have struggled on 5mg for the last 6 months but find it increasingly difficult to put up with the discomfort/pain and lack of energy. I was thinking of doing 5/7.5mg on alternate daysfor a week and see how that works or, just giving a couple of days boost at 10mg to see how that works. Has anyone tried this?From being mainly in my hip and lower back area it now seems to have swung round to my upper body and upper arms.Everyone says I look better because the weight has started to go from my face! Like everyone else I have good days and bad but I really dont notice any difference from the weather. Last week at the height of the snow I had one of my best days for 2 years. The real frustration is that on a good day I start to think it is finally going and then .wham.. I am back to square one. Anyone, enough of my ramble...
Greens - welcome to the forum where I'm sure you'll find a lot of advice especially if you look back at some of the other threads. I expect after 4 years you have been back up to 10 a couple of times and I know then it seems that you go back to square one. During your long stint on 5, did you have blood tests to check if the inflammation was under control throughout that time - that was certainly my experience when on 5 for over 5 months. Perhaps it would be wise to get a blood test done before deciding on the doseage increase and then seek your consultant's advice.
Good luck.
MrsO
Greens
Before you make a decision, read an article written by a patient for patients on Steroids - it is to be found on www.pmr-gca-northeast.org.uk.
It is too long to post on this site.
Also as Mrs O says, get your ESR and CRP rate tested each month.
The hardest drop is from 5mg downwards and must be taken slowly, but as you say you have been on 5mg for the last six months, the withdrawal symptoms should have alleviated by now.
Anyway, do not put up with too much pain, remember PMR is the enemy, not the steroids.
PS We all ramble on this site - you just joined the best club going.
hello there Yes I was struggling on 5mg yet in early December I was OK on 4mg I have now in the space of a week tried 6 7.5 and now have had to bite the bullet and go up to 10mg I fingers crossed am going to be OK at that level I started my steroids 15 months ago The first time I had PMR I went from 20 mg to nil with no setbacks in 2 years !! I have a bit of a mental block with going up to 10 again but last week was really bad I had a very stressful week with trying to get to my horses in the snow Feed shortsges for them and frozen water pipes and I am now wondering if it was the stress and not the cold ?? I am going to study these adrenal glands more closely as they they are supposed to produce steroids but I dont think mine do at lower steroid levels as I was having problems with low sodium levels and thats another things these gland control I am having blood tests next Monday and then see the Doctor Wednesday and ask her about increases whether it is better to zap it hard She did say this to me before I think that you couldnt just go up graduallly Any way hope yours improves I am sure I will get off steroids one day wont I ? ? but when you go back to where you were a year ago it is a bit disheartening Mrs G ( I appear to have been logged out !!)
This is replying to all 3 postings I received.Many thanks for the feedback it is much appreciated.I do have frequent blood tests and am waiting to have another set next week having been put onto allopurinol approx 4 weeks ago. The last set showed inflamation levels were still high and therefore the consultant was reluctant to reduce the steroids. She suggested topping up with paracetomol ( but NOT apirin or Ibuprofen). Have tried this and am not too sure how effective it is. Will look at the North East web site as it seems like there is a lot of good info there. My PMR started at approximately the same time as I was diagnosed with endometrial cancer ( full hysterectomy done in 2006 and 3 years later am still clear) and after prolonged use of HRT. Think there was a link there somewhere!.
Hello Mrs G - oh I'm sure you feel really fed up having to go back up to 10 - I so sympathise with you having had to do that on a couple of occasions myself and remember I felt really low for a couple of days and then picked myself up and dusted myself down, as they say! I found, in line with your Doctor's theory, that I was unable to just increase slightly to the previous dose when in trouble....it had to be back to 10 but only for a couple of weeks, then 7.5 for a couple of weeks, then 7.5/5 alternate days for a couple of weeks. The blood tests returned to normal immediately on 10 and then once successfully on 5 I was advised to stay there for about 5 months. This finally worked (third time of trying) and then subsequently tapering really slowly (with the aid of a chart - too much for little grey cells) has got me to 2.5/2 at present.
You mention wondering whether the stress of having to cope with your horses, difficulty getting their feed and frozen pipes, let alone the freezing weather may have contributed to your increased symptoms. Yes, I feel sure that all of us PMR/GCA sufferers need to avoid stress as much possible because cortisol is produced by the adrenal glands to cope with stress so if our adrenals have been shut down by the steroids, then the artificial cortisol (steroid) probably isn't enough for us to cope.
I do know that for optimum adrenal gland health, cooked (not raw) veggies and animal protein is recommended and that all processed meats, caffeine, sugar and alcohol should be avoided, but I would be really interested to know if you discover any more information when you look into it.
Best wishes for next week's tests and results.
MrsO
Thanks Mrs O yes I was really fed up but as you say we dust ourselves down and off we go again !! I shall have a chat with my Dr next week you can ask her any silly question you like she is great There is no point struggling around and unable to function Housework became a problem even with bending and getting in and out of the car etc and I hate that struggling to get out of bed in the mornings So I shall have to learn to love steroids I am interested in the Adrenal glands but there doesent seem a drug you can take to kickstart it and I dont have that much caffeine and am a pretty healty eater so we will have to see Best wishes to all