I was diagnosed around 8 months ago with PSA, Joint Hypermobility,and chronic pain (like i didnt already know that) I am writing to see if anyone could give me any advice in regards to treatment.
I started taking Sufalazalaine aroud 7 weeks ago but i had to stop in week 4 as my liver functions tests came back at 240,(should be lower than 60), i have been told this week that I will not be able to continue with this drug.
My rheumatology nurse has suggested two medications i can choose from the first being: Plaquenil (Hydroxychloroquine) and the second being Methotrexate. I Believe the first is quite mild and can lead to damage to the eyes but the second will not help if i am due to try for a family. I am only 25 and i would like to have a family one day. The nurse was very abrupt when she told me that i would need to make a decision within a week, i'm struggling to weigh up which would be best and wondering whether anyone could give me any pointers in which direction to go, in regards to success with the treatment etc.?
Hi Sophie, wow--that's a short time frame to figure things out. I think MTX is forbidden while trying to conceive (for both men and women) and I'm not sure what the "half-life" is for the drug, meaning I'm not sure how long you have to be off it in order to get it out of your system so you can try to conceive without fear of causing any problems for the fetus. If you're planning on starting a family soon then the plaquenil would be a better choice.
I took sulfasalazine for several months in addition to Enbrel. My liver enzymes have always been good so far--even on MTX which I took for several months without getting any relief--but I ended up with extreme nausea from the sulfasalazine and once I stopped taking it, it became clear that the Enbrel was no longer working for me. I just started on Humira and I'm only two injections into that protocol. I got some new psoriasis after the second Humira shot so I'm back on prednisone to help a little.
A good tip on the site is to use the search function and look for discussions on plaquenil and MTX. Good luck figuring things out.
I know!! She was very abrupt when saying i needed to decide whether i wanted a family within the next week basically!! i think i will try the the Plaquenil, the only worry was as it was described as quite mild so i'm worried it wont have as much as an effect on helping and i have to end up takig MTX anyway, im not sure whether i should just bite the bullet and start the MTX anyway!! thanks for your advice x
I've been on plaquenil for 5+ years, and started taking it while breastfeeding. It helped a huge amount, lowering my inflammation and my fatigue. It didn't make things perfect, but considering that I was laying down repeatedly, and had a toddler at the time, I really needed less fatigue and pain. My kids couldn't hold my hands because they couldn't hold them without hurting them.
In terms of the eyes, you should have a baseline visual field test, and this needs to be done every 6 months. The longer that one is one the plaquenil, the higher the risk of toxicity to your eyes. So far so good for me. There is no reason not to try it out. As a reminder, it takes some time for any of these medications to build up and start working. You won't notice anything at first, and then you'll realize that you aren't needing to rest as much, and your joints aren't quite so swollen, or that "Wow, my knee doesn't hurt!".
BTW, the joint hypermobility may be due to soft tissue damage. I'm dealing with that with a number of joints now.
That’s very reassuring then, I wasn’t 100% sure whether it was effective in working, anything that will help slightly is a bonus!
I think it will be best to get an eye test first and then start the mess, plus Asti is quite mild I won’t need constant blood tests, do you still have regular blood checks done?
I wasn’t sure what the joint hypermobility was and were the damage comes from, I think I’ve just been quite bendy my whole life that I never noticed it as a condition! How do you deal with it?
Not particularly well. I actually just had surgery to stabilize the base of my thumb, because the ligaments had loosened too much and it was painful. I had been trying to deal with it conservatively for over a year.
PT may well become your best friend. You can't tighten ligaments, but you can strengthen muscles, and this will help stabilize joints that may be hypermobile. I've always been very flexible as well, so I probably don't need as much joint damage to get completely out of whack.
For my fingers that are painful and hyperextending, I use ring splints. I actually just wrote a whole blog post about it.
Really? I feel your pain (literally) ouch. Ive been very patient with the pain for a year now but starting to get very frustrated.
I have seen a physio who discharged me after two weeks as they couldn’t offer any furthe help! I’ve been told to try swimming but it gave me awful pain in m back and shoulders.
Sophie, I go swimming sometimes when thing are bad. I just swim on my back and hold a float across my stomach so I don’t aggravate my back and shoulders. If I swim on my front I always get back ache. I guess I have bad form. Anyway, I kick up and down on my back for as many laps as I can and it helps to get my heart rate up but not stress my joints. Just a thought.