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marsha

Back from the Rheumatologist

41 posts in this topic

I saw my Rheumatologist yesterday; good news all my blood work came back good ( Kidneys, Liver, blood count). Bad news my sclerodactyly has progressed terribly in the past 2 months I can barely bend my hand into a loose fist. My right hand is taking the brunt of it, but it is in both hands. Good news, next month a specialist is coming from California, she has been hosting a seminar for the last 30 years the end of May in Bangor; she takes one or two patients from the 3 Rheumatologists in Bangor and reviews their cases and discusses it with doctors. Well my doctor is using me as his patient. I am excited to get a 3rd opinion. The problem being whether or not to start me on a chemo for the sclerodactyly. My doctor said he doesn't like to do that unless he has to and would like to see if she has any other course of treatment, that he might not know about. He also redid all my original blood work, to see how my titer is doing and the rest since I haven't had that done in 2 years. :) I am hopeful about seeing this doctor and I hope she has some good news; I am really frightened about having to start a chemo regiment!! Hope spring is finding everyone happy, healthy and warm. Maine has been playing games with the temps 2 weeks of upper 70's now its in the low 40's and spitting snow.. UGH.. Thanks for letting me ramble

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Hello Marsha

 

I have never come across chemo (I assume cyclophosphamide?) being used only for the skin but then I am in the UK, I have heard of it softening the skin though as a result. What I wonder about this is whether it will keep the sclerodactyly away for good or is it just a temporary measure? I have sclerodactyly and it progressed over a period of years although the initial onset was very quick and this is despite being on immunosuppressants throughout that time. I guess what I wonder is whether scleodactyly is inevitable in some of us.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda,

I often wonder the same thing about it being inevitable for some of us. I think it is to just slow it down if it can. He said a couple of the meds, one being methotrexate, and a couple others but I kind of shut down after I heard that because I have been really trying to avoid that if at all possible. He also was wondering aloud if my hands aren't trying to tell us there is something more going on, on the insides.. I think that is why he redid all the blood work. I will keep you posted on what happens.

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Please do Marsha. Taking immunosuppressants may well be inevitable and as awful as they sound they're not really that bad. So many people here are or have been on them and some have had side effects and some not. Of those side effects many are mild and some not so mild but better than the prospect of internal damage from the disease...maybe? The jump to cyclophosphamide (I think) will be a huge one if you have not been on any immunosuppressants before.

 

Whatever happens I hope things improve for you and the sclerodactyly halts in its tracks, you deserve a break.

 

Hey we had hail here in the UK last weekend! What next, frogs?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I also hope things improve for you. My right hand is affected worse as well. It sounds like a good idea, redoing the bloodwork and getting a fresh opinion! Let us know how you get on.

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Hi Marsha!

 

What great news, about your blood work!

 

As far as the Sclerodactyly is concerned; I'm glad you have the opportunity to get more input, whereas you are looking for a treatment that would benefit you the most. From where I sit, I believe your rheumatologist is being very conservative, in offering Methotrexate as a treatment.

In fact, though I was being treated with MTX for my extreme Psoriasis (by a dermatologist), with a much lesser dose than rheumatologists seem to use for their patients. I saw marked improvement for my Sclerodactyly, in fact likely responsible for the relaxing/softening of the skin.

 

So! I'm anxious to hear what this latter doctor has to say!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Marsha,

 

That is good news about your blood work and also that you'll be able to see another Scleroderma specialist. Thankfully, I don't suffer with full blown Sclerodactyly; my fingers are a little tight and were swollen but that was helped a lot by the steroids I take.

 

Do let us know how you get on with your appointment with the other specialist.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Marsha, When my skin started tightening more ( about a year after diagnosis) my rheumatologist (in the UK) was keen for me to start on immunsupression straight away. His preference was for cyclophosphamide but he also gave me the option of Mycophenylate (Cellcept- which is a tablet), which was what I decided on as it meant I did not have to spend a day a month at the hospital for an IVI. The Mycophenylate worked really well for me- my skin started softening within a couple of months.

PS Like you my right hand and arm were more affected than the left, I thought this was unsual until I read your and Jad12 posts !

 

X Lizzie

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Hi Marsha

 

I agree too, it is good news about your bloodwork. I'm excited for you as well to get a 3rd opinion. Can't wait to hear what they tell you :) .

 

Sorry to hear your sclerodactyly has worsened. I know it is terribly scary thinking that you might need chemo treatments. If it helps, I was told just recently that they have made huge strides with the new chemo treatments (that was straight from the mouth of an oncologist too). So hopefully, you will barely notice anything if you do end up having to get treatments. Keep us posted and good luck with your next appointment.


Sending good wishes your way!

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Thanks everyone!!

I am scared about the side effects, but as my Mom and I were talking about everyone reacts differently, It may work and It may not. I will keep a positive outlook as I try to do with everything. Has anyone had hair loss and if so, was it just a bit or a lot? So much to think about, but one thing I know is I can't keep going on with the tightening and swelling..

Marsha

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Hi Marsha,

 

I've had a 'chemo' drug (cyclophosphamide) and also take azathioprine and I must admit that my first and biggest fear when told what powerful drugs I would be taking was that my long, curly hair would fall out (at the time I'd just spent an absolute fortune getting it coloured :( ) but despite my worrying (so far!) the drugs have thankfully made no difference. Part of the reason, I think, is that the drug which is administered is not such a powerful dose as is used for cancer patients.

 

I think a few of our members have had hair loss due to prednisolone (steroids) but again, I've been on this drug for two and a half years and haven't suffered any hair loss through taking it.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Marsha,

That is good news as far as your labs and the opportunity to see the specialist from CA. As others have posted everyone reacts differently to drug therapies so it is difficult to gauge how you would do.

 

Have you been to Occupational Therapy for your hands? If your insurance covers this I would highly recommend going. The therapist needs to know that you have to be treated gently but between the exercises, stretching and even adaptive devices like splints there can be a big improvement. I went twice a week for the majority of 5 years (I am probably due for a reevaluation now) and I credit my therapist in keeping my fingers to a slight curvature and the ability to make a fist where my fingers can touch the pad of my thumb. In the beginning I had very little movement.

 

Personally, I hate splints. I would throw them off at night in my sleep but they do help. I have a drawer full of them from ones that go up to the elbow to finger ones. My therapist told me when he was in school they had to experience all of the things they were going to use to help their patients and everyone agreed the worst was splinting!

 

There are many exercises you can do at home, a very simple one is to press your hand as flat as you can against a hard surface. There are balls made for squeezing, putty made for rolling and simply opening and closing your hand can help.

 

My experiences with drug therapies are not good, from methotrexate setting off renal crisis, going into cyclophosphamide toxicity and currently steroids and anti-rejection medications causing physical and emotional issues, but then I might be highly sensitive to these therapies. You may react totally differently and find they work well for you.

 

As far as hair loss, the initial methotrexate caused me to lose all of my body hair and much of my head hair. It has come back and I currently joke I don't know if my bodyc hair came back blond or gray!!

 

Please keep us posted as to your experience with the specialist and what you decide to do.

 

miocean


ISN Artist

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Hi Marsha!

 

As I have mentioned, I was on MTX for 13 years; I DID lose 2/3 of my hair; however, it grew back and it's every bit as thick as it was prior the loss!

 

I'm so glad you and your mom visited about the side effects and have the positive outlook! As was already mentioned, we are all like "snowflakes" and I'm hopeful you do well and gain the results you're in need of!

 

I look forward to your posts to hear how you are doing, but please remember...it takes some time, as do most medications, to begin taking effect.

 

I wish you the best with its results!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Getting nervous... Rheumatology seminar is this Thursday and I will be presented to Dr. Hahn at 1:30. I will find out if chemo is my only option for my sclerodactly. In preparation I got my hair cut kinda short just in case. On a good note my blood work came back all really good, My titer was elevated but not worrisome, Kidneys, liver, blood count, inflammation were all good also, I did have some markers for Raynauds but we would expect that seeing how bad it is. I will let you all know when I return Thursday evening. I have to admit I am very very nervous and this really isn't a great time seeing my son is graduating high school on the 3rd of June, but with all the activities surrounding graduation this is the last thing I really need.. UGH... thanks for letting me vent once again.

 

Hugs,

 

Marsha

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Hi Marsha,

 

I hope that your rheumatology session goes well. I'll be thinking of you and sending good thoughts your way for the event.

 

And congratulations on your son's upcoming high school graduation!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Marsha,

 

I shall be thinking of you on Thursday and really hope that your rheumatology appointment goes well.

 

Perhaps you could focus on looking forward to your son's graduation to help take the edge of the worry of your appointment?

 

Do let us know how it went on Thursday evening.

 

:emoticons-group-hug:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Good luck Marsha. Hope your news is helpful and ultimately so are the drugs.


Kay Tee

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What an experience... I was sat up at the front of the conference where my Rheumatologist presented me and my case. I was then introduced to Dr Hahn from the David Geffen School of medicine at UCLA. She asked me questions, and what bothered me the most, other doctors came up to touch, prodded and pawed me and asked me more questions. Then they discussed, Dr Hahn went through the things from top to bottom what she would do if I had come into her office. Others asked questions and offered advice ( AMAZING). I have been through half of what she suggested; she also mentioned that there was a 70% success rate with Botox, but 3rd parties (insurance) do not like to pay for it :(. They mentioned Right sided heart catheterization and Sympathectomy which she explained is cutting a nerve that runs into the hands so that it frees up the movement a bit and also then the Chemo drugs. As I was walking out a doctor in the back touched my arm and said "thank you so much for coming, you are a very brave young woman". I looked at my husband and wondered why? He said because you got right up there and let strange people examine and touch you, you answered personal questions.... well YA?.. So after the holiday my rheumatologist is going to call me and let me know what the next step is. So for right now I have no answers.... but soon I will. Thanks all, for the warm thoughts; they were much appreciated. I will let you all know when I find the final decision out!!

Marsha

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Hi Marsha,

 

Thanks for updating us with the results of your Rheumatology Seminar.

 

It sounds as though you had a really productive meeting with Dr Hahn at the conference and hopefully now your rheumatologist will be able to determine the best treatment for you to receive.

 

Just to give you some more information, I've included links to Right sided heart catheterization and Sympathectomy.

 

I do hope that now you'll be able to enjoy your son's graduation to the full!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Marsha and thank you for letting us know how all went with your experience at the conference! I can imagine how off-putting it felt, having your person touched as it was; however, IF they come up with a good resolve for you, then it may not seem so bad, when you think about it, as time goes by.

Yes, you WERE very brave and deserve Kudos!

 

Now...you have your son's upcoming graduation to look forward to, which will be a very special happening for him AND for you! Congratulations to ALL of you :balloons: :terrific:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Marsha,

You post brought back a memory that was buried. When I had my crisis the teaching hospital asked if I would "present" to a group of medical students. So like you, I sat (in a wheelchair) at the front of the room while the doctors showed my hands, skin, they asked me my symptoms before sudden onset. Mind you, this was after coming out of intensive care and on dialysis! The students were very appreciative and came up to me after and thanked me, now knowing how scleroderma presents itself (sometimes.) We are a rare breed and most of the time a doctor has never seen one of us. I wish I knew what doctor did the presentation, it was not my scleroderma specialist. Hmm...maybe I can find out.

 

Search "Right Heart Catherization" in the forums and info from others will come up. There are photos of the sympathectomy on the site, search that also.

 

Good luck and WE ARE ALL BRAVE! Thank you becuse you have now helped others.

 

miocean


ISN Artist

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Thank you all and I will keep you all informed when my rheumatologist calls and lets me know what the next step is. We are all brave but if we share our "story" with just the right person maybe, just maybe, something good will come out of it.

Talk to you all soon

Marsha

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I am going for a third opinion on the chemo drugs. This time to Boston to the University, they have a sclero clinic. My rheumatologist is so worried about putting me on the drug he wants to make sure it is the right choice at this time. Which I am happy about!! I go on the 20th and was told it will be a 2-3 hour appointment. I am very anxious and excited to see what this may bring, as I DONT want to start this drug I also can not go on with the aches and tightness in my hands and feet that I am experiencing. Hopefully maybe they have a magic drug that won't be dangerous to take :) (one can wish) I hope summer is finding everyone warmer and happier for now. I will keep you all updated when I come back from the appt. I am so happy for the support that we receive here.. It sure makes things better..

Marsha

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Hi Marsha,

 

It certainly sounds as if your rheumatologist is on the ball and is really considering the best course of action for you. Sometimes with regard to taking medication we do have to weigh up the pros and cons of each drug. My consultant really wanted to reduce the dose of Prednisolone that I take, but unfortunately it caused my lungs to have a little flare up and so we reluctantly decided to keep the dose going at 10mgs and then gradually reduce by 1mg after a another month to see how I get on. I was very reluctant to have cyclophosphamide which is a chemo drug, but I have to admit that without having it my lungs would be in a much more sorry state than they are now.

 

Please do update us when you have your appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Marsha, you have me sitting on the edge of my seats, waiting to see if they have a Magic Drug for scleroderma, with no side effects. I do hope they find something that is suitable for you.

 

Generally speaking, the chemo drugs when used for scleroderma are at lower doses than when used for cancer, so you don't have to worry about your hair falling out or being terribly ill, etc. But still, any treatment that we have doubts about trying makes a second opinion worthwhile. I'm eager to hear how it all goes.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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