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View Full Version : New here, and confused!!!



mabeljane
02-14-2010, 12:37 PM
Hi everyone, I was diagnosed with RA in July 2009. I also had other symptoms which my rheumy said were not typical of RA, and he did tests to check for an overlap syndrome, which he said the main overlap is lupus. I hade an appt on Friday with the consultant who aske dif the symptoms are the same, I told him they were, I was on mtx 15mg with tramadol 100mg. He did some more tests, hand scan, checked rashes, asked about headaches, hair loss muscle pain/aches. Still no answer, but he has prescribed hydrochloroquine (planequil) at 200mg. I dont know the results of the bloods, as he didnt tell me, and I forgot to ask. Will call them and ask for a fax to be sent to my GP. What I am confused about is, have I been given the planequil due to lupus symptoms, or just an added med for the RA? If the bloods still show nothing, does this mean it just isnt showing yet? I have a friend who said it took 6 years to show up in bloodwork!! Sorry for such a strange first post!! Be glad to hear from people, and get some support. Thank you:unsure:

magistramarla
02-14-2010, 03:17 PM
Hi MJ,
Welcome to WHL. Your name made me think of MJ, of Spiderman fame. If you don't mind, it would be a perfect shortened form of your name!
I also have overlapping AI diseases - RA, Lupus, Psoriasis and Sjogren's. I'm on the same meds, too. I take MTX in the injection form and a Plaquenil a day. I tried Tramadol once, and had such an outlandish reaction I will never touch the stuff again.
Blood work can be very slow to "prove" the existence of an AI disease. Many of us have had problems with docs who "treat the blood work" only and refuse to pay attention to our obvious symptoms. You are lucky that you have one who is treating the symptoms. I've seen Plaquenil mentioned (along with MTX) as a common prescription for several AI diseases. They are both supposed to slow the progress of the diseases. I'm sure that someone who knows more about this than me will come along and explain it better.
Feel free to learn all that you can here on our threads and ask any questions that you would like. There is usually someone lurking around who likes to chat.
Hugs,
Marla

mabeljane
02-15-2010, 09:22 AM
Hi Marla, (been reading the user name thread!) yes MJ is lovely! hadnt thought of that!! thank you for the advice, its so hard sometimes when you dont get straight answers, especially as its always such a rushed appt, as I'm sure you know. I think the only reason he was prepared to add the hydrochloroquine was that I had been to see a private consultant to get a second opinion, as the mtx wasnt working, and its been 5 months. At this appt I was told that the RA needed to be treated more aggressively and he would add sulfa and plaquenil to the mtx. This was without taking into consideration the overlap. I showed my usual consultant the report, and after reading it he decided to up the mtx to 20mg and add the plaquenil. I also said that I want to keep working, and each time I have an appt they ask me if I want to give up. I think its really that they are saying that if I dont work it wont matter so much about the pain and swelling etc. As I work with young children, its qauite physical, and I want to work as long as I am able.
Anyway, thankyou for replying, I will be looking around on the site for more info.

laurid8967
02-15-2010, 09:50 AM
Hi there Mabel Jane - and welcome!
As usual Marla has given you some good info! I dont believe Plaquenil is usually given to patients with JUST RA, but it is one of the approved medications for treating lupus. Plaquenil is an anti-malarial drug (used to treat malaria - I know-go figure) but years ago was found to help lupus patients with the symptoms of fatigue, hair loss and rashes, and can help with lung symptoms. Clinical studies have also shown that being on Plaquenil can prevent lupus flares/lessen the intensity of flares. Some ppl do get some stomach side effects with it (I have never had a problem at all w. it) but side effect are very minimal. Particularly compared with some of the other meds used to treat lupus (MTX, Imuran, Prednisone).
The only bummer with the plaquenil is it can take sometimes up to 6 MONTHS to see any difference and many ppl dont even NOTICE a difference until they go OFF of it (at which point they realize - Oh crap, that was working!) and go back on it. Also, you should have your eyes checked every six months as Plaq CAN (very rare) cause some toxicity in the eyes,.
I dont have RA, but have several friends with serious cases of it and they SWEAR by Enbrel. THey give themselves daily injections and ALL have them have been able to go back to work and feel GREAT. Unlike lupus, there has been ALOT of new medications used to treat RA and prevent progression.
Hope this helps, and hoping the medications work for you and enable you to feel well! Again, welcome and there is a ton of info on the "sticky" notes on the top of the forum Lauri's Lounge. (No, not named after me, but the daughter of the AMAZING moderator/creator of this website.
Best wishes coming
Lauri

mabeljane
02-15-2010, 12:26 PM
Hi Lauri, thank you for your msg. This is all still new to me, and a bit of a mystery!! I know the biologics work well for RA, but unfortunatley in the UK you can only go on them with the permission of the practice care trust, and only then after trying 3 of the DMARDs. Its all down to cost, and as they are very expensive it takes a while to get them. At the moment I have only tried the methotrexate, so its going to nbe along time before I can get to the biologics. I just wish I knew about the overlap syndrome. It seems to take so long to find out what is really wrong, I know with auto immune diseases its hard to diagnose. Willl be reading up on here to get more information and coming herre for support, thank you.

Saysusie
02-15-2010, 06:40 PM
Hi Mabeljane;
I am Saysusie, the moderator/administrator of this forum. I see that you've already been welcomed and given some excellent advice. There is not much that I can add to what has already been said. I just wanted to make sure that I added my welcome to those you've already received. There are so many of us here who suffer from over-lapping diseases/conditions and often, it is difficult to tell which symptoms are from which disease. I, myself, have 5 overlapping issues. It is difficult to get concrete answers in a timely manner, however, we are here to help you as much as we can while you are going through this diagnostic process. You are not alone!

Peace and Blessings
Namaste
Saysusie