Whitney

Need Input!

26 posts in this topic

Hi Whitney, your morphea sounds very much like mine. My spots are very symmetrical. Where ever I get one on one side I get it on the other side. I have them all over with my stomach and back full and sore from my pants rubbing them. Mine are called generalized and I have tried many treatments, different creams which I don't think did anything.

 

I just finished uva1 treatments which seemed to help a lot in stopping inflammation and progression. The spots got very dark which they are now fading some. Unfortunately, it didn't put it in total remission so my doctor has me on plaquenil at the present time. She said it takes a full 6 months to get going so I'm going to give it a good try. I get really exhausted some times, not always but by the end of the week I can't wait for the weekend to come so I can sleep in or rest in the middle of the day. I work full time and take care of my family and home. I'm a single mom. I also have it on my face, not bad but I know its there and my face is feeling tight.

 

I'm not sure what will be the next treatment for me if the plaquenil doesn't show progress, I'm thinking it may be methotrexate but not sure. Beedee will have to keep us updated on her progress. I am glad you found this board and I'm sure you will get some answers your looking for. If I can be any help just let me know.

 

Sharon

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Hi Whitney,

 

I am a little late, but I wanted to welcome you to the Sclero Forums. I'm so glad you've joined us. You will find a wealth of information, support, and great friends here. I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thank You Razz,

I am on Celcept 500mg. 2x a day. I will keep that in mind. Maybe I can incourage my doctor to increase the dosage if this fails.

Also do you find you pick up more colds, flu ect. now that you are on immune suppressents? And that they seem to take a little longer to get over? This is another thing I think can just be from getting older but has not happen to me till I started on this type of drug, so I am really not sure.

 

Thanks, Whitney

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Hi Whitney

 

I don't have morphea so I can't help with that either but I wanted to welcome you too. You have definitely come to the right place....ask all the questions you want...there seems to always be someone here that can help....as I'm sure you have already discovered.


Sending good wishes your way!

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Whitney,

 

That's a good question to ask whether I find myself catching colds or the flu. Even I wondered about that before taking this medication. Surprisingly, I haven't caught any colds or the flu nor have I become more susceptible to them. I usually get the flu vaccine as a preventive measure but last year I missed my shot and luckily didn't come down with anything. I do pay attention to whether someone is sick and avoid being around anyone I hear coughing or sneezing.

 

Hope you're feeling better soon! :)

 

Hugs,

Razz


Live well, Laugh often, Love much

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Thank You Sheryl,

 

I am very greatful for the things I have been able to read from all of you. It does help me put a better picture to what I have.

 

The tiredness sometimes hits every day and sometimes it doesn't. But I have never been a person to take a nap so it frustrated me, and felt so strange.

 

Thank You Again.

Diann

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Hi Danielle,

 

I remember when I first started going to the doctor for this, he told me to avoid stress if I could. So you maybe right about stress affecting this. I work in a stressful job and along with that the day to day stresses of every day life might just add to it.

Do you think the different seasons form summer to winter, or hot to cold, and humid to dry seem to bother your Morphea to? It seems the humidity seems to make me itch more along with the heat.

 

Whitney

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Hi Loy,

I'm a newbie also, and am just trying to get answers. I am not sure if my mirrored spots are coincidence or not, but they are on both sides of my body.

I think the tiredness comes from this because I never had it before like this. It doesn't feel the way you do when you have been very active and just gotten tired. The best I can discribe is the flipping of the switch.

You say you are trying to get through to doctors? Are you on medication now? I hope you find something to help you soon.

 

Whitney

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Please let me know what happens with your treatment. I too have the spots on both breasts and are very itchy. I have become very creative on how to scratch and be discreet. LOL,LOL We should have a whole forum on, How To Scratch Discreetly, LOL. Has your doctor told you, Do not scratch, It only adds fuel to the fire., He is right I am sure, But for me I can't help it and I have gotten pretty good.

How long have you been diagnosed with this? How has the Diffuse Sclero affected your body? Do you think it has caused the morphea to be worse?

 

Whitney

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Hey!

I live in an area that definitely has the seasons, our winters can be bad, but our summers never get really hot. I did go to Florida with the morphea as well. I haven't noticed a difference to be honest, but I do not really have itching, a bit of aching and tightness, but no itching, really.

I feel very strongly about the stress thing, I've had several things going on this year, and I think they certainly contributed to the new spots, and the difficulty of getting rid of the current ones.

Let me know if you're wondering anything else.

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I've noticed the fatigue thing lately - I think my recent pregnancy (7-month-old son) may have reactivated things. I just cannot sleep enough, and you're right, it's not a "been active" tired. It's not even a "boy, I've been up all night!" tired. It's just a "I just can't do anything but sleep" tired.

 

So far, I'm still waiting to get in with my general practitioner (he's not the most responsive fellow), and I'm going to immediately ask for a referral to a rheumatologist. Even when I was first diagnosed 17 years ago, no one ever put me on any medication. All the dermatologist at that time did was measure my arms to make sure they were the same length, and sent me on my merry way.

 

But the itching - ARGH! My spots are right on the waistline, so either pants or pantyhose are constantly hitting those, and on my arm running up the lower outside part to my armpit, so I feel like all I do all day is itch.

 

Keep me posted on what all you do, and I'll keep you posted, too!

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