Clementine

Aching all over...general feeling of unwellness

29 posts in this topic

Patty,

 

Wow, not with the stiffness huh? That's a bummer. My rheumatologist never mentioned Methotrexate to me. But he sings the praises of Plaquenil and thinks it should be in all the drinking water. As far as vision, I'm already blind as a bat (no not literally) so I don't think that will bother me much. I guess like anything I'll have to weigh the pros and cons when I'm on it and see.

Such a drag that I couldn't stay on the Prednisone. I felt like a 16 yr old again, but the side effects were just brutal. To me, not really worth it. So onward we go trying to find releif.

 

Karen

Share this post


Link to post
Share on other sites

Hey Tangie,

 

I feel like you described very often. Usually for me it's worse when I'm overstimulated or tired. I have found NOTHING that makes it any better for me, other than waiting it out.

 

Sorry love


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Tangelo,

 

I feel the same way often, I always just guess that it's some kind of flare up from sclero. I'm with Sweet, I just try to wait it out feeling blah. It always has gone away after a few days to a week for me. I take plaquenil also, I'm not sure I have felt any relief from it but it is supposed to slow disease progression. Take care and I hope you feel better soon!


Diana

Share this post


Link to post
Share on other sites

I take a combination of methotrexate and plaquenil. I guess it's working ok, but I think I need an increase in the plaquenil. Having more arthritic pain. I still get the overall ill feeling so the plaquenil isn't helping me with that. I give myself B-12 shots for the fatigue and it seems to help. Used to do 1cc a week, but think my body got used to it so I have increased it to 1cc every 3 days. My rheumatologist says you can't get too much of it so I'm hoping that will help.


I may have Scleroderma, but Scleroderma doesn't have me!

Share this post


Link to post
Share on other sites

Hi smac...

 

You give yourself the B-12 shots? :o Where do you get them from? Does the doctor have to prescribe them? And where on your body (if you don't mind me asking) do you shoot it? I'm asking because I'm interested in maybe giving it a "shot" Hahah :D

 

Thanks

Karen

Share this post


Link to post
Share on other sites

Hi Ladies,

New to this forum but not to Diffused SD have suffered for 2 1/2 years before finding this group.

Methotraxate did not work for me, just made me so sick. Predisone I loved but my rheumatologist said 4 weeks max to try and shock my system and that's all I got, but I was never the same when I came off.

However, I was put on .05 mg of Eltroxin which is a Thyroid med - even though my levels when testing were in the normal range. This one pill gave me a little energy boost and helped with the aches and pains. My doctor said it was a safe, known medication and it has really helped me.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

Share this post


Link to post
Share on other sites

Karen....my rheumatologist prescribes the B-12 and the syringes (recommend 31 gauge short needle). The nurse showed me the process and I inject in my leg. Never thought I could do it, but it's not bad at all.


I may have Scleroderma, but Scleroderma doesn't have me!

Share this post


Link to post
Share on other sites

I would highly recommend B-12 shots! Sometimes it takes a few shots for your body to get used to them, like 3-4. I didn't notice any difference my first shot but by the forth I had tons of energy.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hi Jen,

 

I sure hope you can find something that alleviates the fatigue... the unwellness that you are feeling. As beaty mentioned... it could well be a flare.

 

My sister-in-law started on Plaquenil about a month ago, so I'm keeping my fingers X'd that this works for her. She has Sarcoidosis and two weeks ago, got a diagnosis of Ankylosing Spondylytis (last week, I could spell it... this week?!)

 

The B-12 shot seems to work well for many here!

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

B=12 shots are great!!!!

I have them regularly and don't think I could function without them.

Annie

Share this post


Link to post
Share on other sites

Thanks Smac...I think I'll ask about it at my next appt with my Rhumetologist. Gonna have to get used to giving myself shots sooner or later as we are having fertility issues and they were mentioning some sort of self induced shot for egg production. (sorry for TMI Lol).

 

Karen

Share this post


Link to post
Share on other sites

Lucy:

 

Thanks for the heads up on Eltroxin. Synthroid is the only med I'm allowed to take until the doctor figures out what is causing my hives.

 

They're still continuing, so if necessary on Monday, I'll mention this thyroid med.


Tru

 

It is what it is...........

Share this post


Link to post
Share on other sites

Tangie Girl:

 

How are you feeling today. Weather is getting hot here. Going to be in the high 70's by Friday.

 

Thinking of you and the little cuties. Mia's eyes are terribly infected. Oliver I believe, is the culprit, as he is constantly grooming her. I bathe her eyes with a washcloth and warm water and apply an antibiotic to them. I just hate seeing my poochies in discomfort. I love them dearly.

 

Linda


Tru

 

It is what it is...........

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now