Hi, I was diagnosed only three weeks ago with Sjogrens, I have already plenty of other autoimmune diseases of which I have had since I was thirty, though was not healthy in my 20`s. I am on Prednisolone and in three weeks time I start taking hydroxychloroquine. I have problems walking and have a lot of muscular pain, until I was put on Prednisolene I felt like my neck wasn't a part of me, it felt like it was hanging off with the pain, and not able to hold it up all the time. That has been so much better since the steroids and still have four days to go on them.
Until three weeks ago I had never even heard of Sjogrens, and to be honest was in a bit of shock that something else had been found, that everything after that was fuzzy, and actually cannot recall too much of the what the immuniologist said after that.
Anyway, thought I`d say Hi, and let you know a bit about myself, apart from having Sjogrens, I am in general a happy go lucky person, love my animals, have two cats, and a dog, have two wonderful kids, (OK they do play up on the odd occasions, but one is a teenager!!!!!), I used to have many hobbies, but due to pain, not able to do them a lot, but still frequent the forums of wargaming (no I don't play, but do love making the buildings) I enjoy life, though would have been grateful if there hadn't been so much pain in it, but alas these things happen, and I choose to make the most of what I can do.
Thankyou for listening to my ramblings.
Carol
Hi Carol :)
Welcome to sjogren's world. :)
It's always a bit of a shock to get the dx isn't it? We go to doctors looking for cures and of course with AI diseases that is not what happens. I'm glad you are responding well to 'Pred' and many of us have found hydroxychloroquine helpful too. I believe you have to taper off the pred pretty carefully.
A useful tip is to taper onto the Hydroxychloroquine (Plaquenil) slowly as well. Start with haldf a tablet every other day - always take with food and build up gradually to the full dose over about 4 weeks. It usually takes several weeks or months to work fully anyway and tapering onto it there is less likely to be some common side effects such as nausea.
I was told by my rheumy to taper onto it and I've never had any side effects at all.
When do you go back to see your doc again? I find it handy to keep a symptoms diary - it keeps track of things, timelines, changes and appointments! I also go for check ups armed with a list of questions and a pen to write answers down so I can digest what the doc says at leisure!
Take care - Scottie :)
Hi Carol
Welcome from me too! I loved your post and I'm sure you'll find lots of new friends here. You've got a great attitude - yes, we often have a hard time with symptoms, pain, adjusting to meds BUT we also treasure the positives in our lives. As long as we can keep the balance right we'll be ok. And when it's hard to do that we can come here and moan to each other!
It can take up to six months for the Plaquenil/hydroxychloroquine to kick in so don't be surprised if you don't notice much difference immediately you start it. Why does your doctor want to take you off Prednisolone so soon? I started on a highish dose - 40 mg a day - which was tapered down to 15 mg over a year and I've been on that dose for a while now. As long as you have bone density scans and other checks you should be ok.
Keep posting and letting us know how you are doing.
Thinking of you - Chickpea
Welcome!
I love my plaquenil. It does take a while to kick in though. Hang in there. You'll notice the benefits eventually.
The side effect I experienced was blindness. I am sorry that you have this disease but pleased that you found us. You will find a lot of helpful information here.
Hi Carol,
Let me also welcome you to the SJS World and family! I'm sorry to have to meet you this way, but I'm glad that you've found us!
Please look around as there are tons of topics, and gaggles of really great members to boot! Now, I'm not bragging (much ;) ::) ;D), but we do have one of the friendliest boards around.
I can't speak of Prednisone as I've never been on it, but have been on Plaquenil for several years as well. Like the others, it took several months to kick in, and it's helped with the exhaustion and pain. I know that it has side effects, fortunately I haven't developed any, but you'll have to get your eyes checked every six months just to be sure (as Plaquenil can cause serious eye problems, but that is rare).
I see that the others have given you some good information, and there's not much that I can add.
Take care and I hope to chat with you soon -
Patze
Thankyou everyone for such a lovely welcome, it certainly is a very welcoming and friendly place. I apologise for not writing back sooner, but have been asleep most of the time.
I had to see the doctor this morning, and she feels that I may have to stay on Prednisolone for a bit longer, but first she wants me to use Co codomol, and would prefer the specialist to see me a bit sooner. I am due to see him again in three months time roughly, but do have the nurses to see before then. I will get in contact with him as well, as I really haven`t felt at all well, and I can generally work around my fatigue, but this time I`m completely unable to, I become more like a Dormouse each day, just not so cute :) My specialist did also tell me it takes a while for the Hydroxychloroquine to kick in, but thankyou also for the advice on gradually start taking it, I have been looking through the threads and have already found a wealth of information. Being armed with so much information, gives me the ability to tackle it and understand my symptoms rather than get cross.
I do keep a diary of everything, has recommended by my specialist, and also any painkillers that I have had to take on top of my daily medication for other things as well. I swear I rattle as I move, but I do try not to take painkillers, unless I find myself getting grumpy for silly reasons, then I know its time to take something.
Thankyou again for a lovely welcome
Take care everyone
Carol
Welcome to the Board. I am fairly new to having been diagnosed with Sjogrens in March 2009 (wow it has been a year now!) after 6 year "specialists runarounds".
Glad the meds are helping you. Also very glad you have family that also understand about the effects autoimmune has on you. I am solo myself but have good friends, tons of long distance cousins and spoiled rotten cats. My SJS symptoms seem to be mostly internal and I get infections very easily. I am pretty easy going too as after my 6 year "heck" with the specialists I finally got sick and tired of my rollercoaster emotions and am taking things as they come. My intial tentative diagnosis was lymphoma about 3 years ago so I like the Sjogrens label a lot better.
You will find lots of helpful info here. Just remember that autoimmune affects us all diferently. Welcome!
Hi
Welcome from me too. I am a newbie to the board but have had Sjogren's and several other connective tissue diseases for several years.
Everyone here is wonderful - helpful, friendly, comforting, the works!
Hope you feel better soon.
Joyce
Hi Carol,
Sorry I'm late jumping in here, but I also wanted to welcome you to Sjogrens World! I'm glad to hear that you have found the boards to be informative and friendly. Feel free to ask any questions that come up an jump right on in whenever you fell comfortable doing so.....this is a safe place to do just that!
WELCOME!!
Thankyou again to everyone for such a lovely welcome.
I was diagnosed with ms and pernicious anemia when my daughter was 6 months old, and my thyroid just shortly afterwards. i was told about 5 years ago that I had rheumatoid arthritis, though apart from really bad flare up, i couldn't`t say it felt like rheumatoid arthritis. It was late last year that I actually got told I hadn`t got MS, but that I should be grateful that i hadn't got it and had only got CFS, fybromalgyia, along with thyroid, and pernicious anemia????????????????? I have to admit I kind of lost it abit at that point. I`m glad I did, because it was at that poitn he said he would refer me to a immunologist specialist, and though he has said that I have got Sjogrens, and neuropathy,he at least understands, and that in itself gives me hope and I don't feel neurotic, and its actually nice to know that the pain is actually there, and that its not in my head, which for years I had started to feel the doctors had felt that way, and even before the MS was officially diagnosed, I had to see a physciotherapist to try to find out why I was having psychosomatic symptoms. Now it seems that a lot of damage (i`m unable to walk far, and have to use a wheelchair when out, and crutches when indoors) because they had let the symptoms for so long.
I have to praise my specialist, he is truly amazing, and he did thorough checks, and never said anything till I had all the tests back, and even better he put my GP in his place. I wish I didn`t have this disease, but at least knowing that I have actually got something which is causing so many problems, makes me feel a little bit saner. (the kids, husband, and animals make me totally insane really, but if it wasn`t for them, I`m sure I`d have list it years ago)