I have suffered for Psoriasis since the age of 2 and PSA was diagnosed in my late 20s. I am now 60 and have chronic pain in most of my joints. I am taking Naproxen, Co-codamol and Amitriptlene but the pain does not ever seem to get better. My most recent x-rays (about 2 years ago) for my knees indicated the damage was severe and the joints needed replacement and my hips are in a similar state. However, I have been
refused surgery due to my weight. I have lost 5 stone and I was nearing the BMI of 40 that was required to carry out the surgery. I have now been told by my GP that I have to get down to a BMI of 35 before surgery will be considered. Has anyone had a similar experience and how did it turn out?
Keep going with the wait loss. You have done really well so far. Stick with it
Gosh, that must be so disheartening, to almost reach your goal and then for the goal posts to be moved, that's terrible. I admire you so much for losing all that weight, you have done so well.
I am sorry, I have no experience to share, I just felt I had to reply.
My Dad had PSA and he suffered quite badly, I am fortunate in that I just have psoriasis .....and long may it last.
Don't give up the fight, you have done amazingly well, I just feel so cross that you have been let down.
Pat xxxx
Thanks very much for your support, it does help to share! I have felt a bit down and your comments have given me a boost. One of the most frustrating things about the situation is that is not technically legal to withhold the treatment.
Has your Rheumotologist never suggested one of the DMARDS (Disease modifying anti rhuematic drugs) such as methotrexate, cyclosporin and there are of course the newer bilogic therapies Enbrel (etanercept) Humira etc.
Or perhaps you have tried these already? Suggest you look at the Arthritis Research UK site for drug information
Thanks Okapis for your comment.I have looked at all the research and did wonder about DMARDs. I think that I have not been offered these as the damage to my hips and knees is too severe and modifying drugs won't help. I will ask my doctor if they should be prescribed for the rest of my joints shoulders, toes etc to slow down the progression of ths disease. Have you had good results with DMARDs?
Sorry - I have accidentally repled to myself?
Yes! Best practice these days is to treat PA as early as possible with DMARDS to get the best results. See sites on PA and its treatment.
Even with severe bone damage I would have thought it worth discussing with your rheumatologist. PA is after all a chronic and progressive disease, although it can decide to go away for significant periods for some people. Will of the wisp disease - here one minute in a flare and off again leaving relative peace and quiet!
Not to have had any DMARDS is a bit strange....
I have been to the docors again and they have prescribed tramadol patches. Does anyone have any experience with these?
More pain killers. Did your doctors give any reason they would not try a DMARD for PsA?
As I no longer tolerate NSAIDS and Codeine based pills I now use a patch called Butrans in the UK.
I must say as far a delivey mechanisms goes it takes some beating - continuous delivery over 7 days, none of the peaks and troughs of pill taking, simply because I forget to take the next dose in time.
I have found however that I need to be careful not to overdo it.
Too much activity and I feel as if I've been hit by the back of a bus the next day or even that evening!
More pain killers. Did your doctors give any reason they would not try a DMARD for PsA?
As I no longer tolerate NSAIDS and Codeine based pills I now use a patch called Butrans in the UK.
I must say as far a delivey mechanisms goes it takes some beating - continuous delivery over 7 days, none of the peaks and troughs of pill taking, simply because I forget to take the next dose in time.
I have found however that I need to be careful not to overdo it.
Too much activity and I feel as if I've been hit by the back of a bus the next day or even that evening!
More pain killers. Did your doctors give any reason they would not try a DMARD for PsA?
As I no longer tolerate NSAIDS and Codeine based pills I now use a patch called Butrans in the UK.
I must say as far a delivey mechanisms goes it takes some beating - continuous delivery over 7 days, none of the peaks and troughs of pill taking, simply because I forget to take the next dose in time.
I have found however that I need to be careful not to overdo it.
Too much activity and I feel as if I've been hit by the back of a bus the next day or even that evening!
Did you manage to discuss DMARDS with the Docs? Another painkiller does not stop disease progressions. That said I'm currently using Butrans patches UK as I can no longer tolerate NSAIDs or codeine based pills. As a delivery method of pain control I reckon they are hard to beat. No more peaks and troughs through forgetting to take the next lot of pills on time. On the other hand its very easy to overdo it on patches...I did in the first two weeks and found that I either felt like I'd been hit by a bus the next day or virtually collapsed with fatgue the same evening. Pacing of activity applies to the use of patches as well!
I think we are using the same patches as although the doctor said they were Tramadol they are not called tramadol on the packaging. I will watch out for the fatigue as I am still teaching full time this could be a problem. I did ask about DMARDs, but I saw a locum and she said they must be prescribed by a Rheumotologist . I will see my GP again an ask for a referal.
Yes DMARDS are only prescribed by Consultants at hospitals...sorry did not realise you were talking about a GP.
No problem. I am going to ask to see if my GP will refer me to a Rheumotologist even though I have not reached the correct BMI for the operations on my knees and hips. Hopefully using DMARDS will stop the rest of my joints deteriorating so fast!
A rheumatologist wont deny you DMARDS because of your weight especially since you are loosing it. Surgery on hips/knees yes understandably so!