Flare ups - Flushes - Telling My Rheumy?

[Joy]

I have times when I feel REALLY tired and others when I am just 'age' tired! How long do flare ups usually last or is it unique to everyone, I'm guessing the latter. How can you tell it's a flare up and not just something else? E.g. horrible viruses going around.

My body hurts right now and I don't know if I should be telling my Rheumy every time or just wait until my routine apt comes around when we have our chat, she seems so busy. I don't really like taking tablets, but have read on this site that it's best to get medicated early if you do have Sjogrens. I don't want to get other problems because I left things. Decisions, decisions. Right now I am only taking pain killers.

Also is getting really hot part of Sjogrens, or just those horrid flushes? My poor husband is freezing while I refuse to switch the fan off at night and we are in winter... Phew!

By the way, how do you ladies write your signature bits on the bottom of the posts... e.g. your dx and treatments, I'd love to know. Thanks

[lighthouse33]

On a forum page below where it says Hello "your username" are a list of options:

Home - Help - Search - Profile - My Messages - Members - Logout

Click on Profile
Click on Forum Profile
Scroll down to Signature and Enter Information in the Box and then go to the bottom of the page and Click Change Profile

Your information should appear at the bottom of your posts.  Hope this helps.

[Joy]

Thank you...

[mshistory]

I'm on my phone so I'm sorry this isn't as thorough as I would like but I do get very frequent fevers and hot flashes and it is not age related (I am 33 and nowhere near menopause). It has gotten somewhat better on Imuran and daily Relafen.

Over time, you will learn to distinguish the pain and fatigue associated with this disease vs. some other illness. I usually know because I overdo it and try to do too much then pay for it for the next few days

[Joy]

Hi mshistory
I will be compiling a list of things that have occurred since I last saw my Rheumy and I will blurt it all out to her when we meet, although I never feel that she has much time and is always in a rush... The NHS can be great but it's way too busy.

For the past month or so my index finger is really painful, the other night I couldn't open a jar! Big ouch! It's not red or swollen and is really only on my right hand so could this be part of Sjogrens? I don't know!!!

As I live in the UK I don't know if Imuran or Relafen are meds we can get or are prescribed here!

Take care,

[mshistory]

Hi mshistory
I will be compiling a list of things that have occurred since I last saw my Rheumy and I will blurt it all out to her when we meet, although I never feel that she has much time and is always in a rush... The NHS can be great but it's way too busy.

For the past month or so my index finger is really painful, the other night I couldn't open a jar! Big ouch! It's not red or swollen and is really only on my right hand so could this be part of Sjogrens? I don't know!!!

As I live in the UK I don't know if Imuran or Relafen are meds we can get or are prescribed here!

Take care,

That's a good idea to bring a written list - I always have a pretty lengthy one and I make a copy for myself and one for my rheumatologist, and we sit down together and go over it at each visit. I am extremely fortunate that I have a doctor who devotes considerable time to his patients, but I do think it helps having everything in writing; it makes it easier for us both. I also try to be very thorough in keeping him informed of any medical issues I've had in between appointments because I never know if it's something that might alert him to worsening symptoms related to my AI issues or even a new AI problem we need to look into.

Imuran is an immunosuppresant, and is usually prescribed for more severe cases of Sjogren's or SLE when Plaquenil does not control symptoms. Methotrexate is not an option for me as I have what is most likely some form of interstitial lung disease (which has thankfully not caused any scarring yet, and hopefully doesn't). I was prescribed Imuran while I was still on Plaquenil after developing skin rashes in addition to the systemic issues I have (shortness of breath, tightness in chest for which I use albuterol; fevers; nausea; joint pain and swelling; history of pleurisy; hair loss - I am nearly bald - combined with my inability to gain weight, I look truly frightening without my wigs!; and quite a few other issues that I still don't know if they are related to AI disease or not.)

Relafen is an NSAID that is frequently used for arthritic pain - I take it twice daily and I think that's probably what is helping to keep my fevers at bay most of the time now since NSAIDs are also used to treat fevers! My joints do swell (not HUGE swelling, but they do get stiff and swollen, and sometimes red too) but not everyone with SjS gets the joint swelling and redness - just the pain, so it's very possible your finger pain is related.

HTH!

[Joy]

Thanks for the info mshistory.

Glad that I may not be going bonkers with this finger thing. I always read on the internet that any joint pain has to be bilateral and I mainly get the joint pain in just this one finger and my right hip, which can wake me up in the night. Overall muscle pain can be anywhere.

I too have lost quite a bit of hair, you can see my scalp sometimes and I am very conscious of it. Before going to work, it seems to be taking me longer and longer to cover up the patchy areas with what feels like just 5 strands! i too thought of wearing a wig at some stage if things get really bad.

[gurs]

I know hormones and stress can cause some of the flashes...Your hormones can change at any stage or age in your life.
I would have them all checked...some medications, supplements, even foods can alter your hormones as well. I know
soy does?

Gursie