OT - update on "pruney fingertips" | Arthritis Information

I lost my inbox with the change over and a poster had pmed me, and asked if I found anything out about "pruney fingertips" to let them know, and so I am going to have to post in the open forum as I lost the pm. Sorry about that,

I saw the dermatologist again today. He has had me on a very strong steroid cream for two weeks on the fingertips that look like blisters and about to crack, but they don't, so its very strange looking. The "pruney, water-logged" feature has slowly travelled down all ten fingers to the palm, now going towards the wrists. The Raynauds is very evident with the red/white/blue coloring. This has all happened in less than six months.

The derma two weeks ago looked over my 06/06 tests and said its definitely scleroderma, malignant. He is being very good to me and I like him alot. He said there are just some things doctors cannot fix, and at least he was honest with me.

Today I flat out asked him what is this wrinkling of my fingers that is moving so quickly and he said that he had never seen anything like it before, had been researching it for two weeks with no success, and is going to biopsy it next visit. The front desk unknowingly let it slip he is in close contact with my wonderful primary.

He looked over my original diagnosis paperwork from the ex-rheumy of two years ago, and the two separate second opinions and goes "They all say you have something different." Yep, one said I had RA, two said I had lupus. The lupus tests were all negative. The RA was half there. Differential doctor's disease. Some sort of mixed connective tissue. All said not scleroderma, even though that was the only one with completely positive results.

The 18 months of methotrexate and plaquenil were unfortunate as I now have osteoporosis and liver damage of some unknown sort at this point. Both of these drugs do not work on scleroderma, but minocin does. He is very happy I am on the AP therapy. So is the eye doctor. Now I know why I didn't get any results from the MTX or predisone, etc., wrong diagnosis, wrong drugs.

So, I apologize that I lost the pm from the poster who wanted to know what happened, but right now it is still undiagnosed, except he thinks its a some sort of dermatitis. He said the biopsy will tell us alot. He is also going to pull fluid from a joint and see what's in there too. What a concept. I am very happy to have found a doctor to finally do some real testing.

He says that scleroderma mimics RA and is skeptical that I have RA and after over a year of reading posts in here, I have to agree.

With that, I wish everybody the best and if I get any sort of definitive answer on this "pruney fingertip" symptom, I will post it or please pm me again :) Take care ~~ CathyCathy, it sounds like your leaving us. We don't care if you don't have RA, we already like you :)

I'm glad you'll be finally getting some answers. I didn't know that scleroderma could be malignant, what does that mean? I've only heard the word used in connection with cancer. Please let us know what happens with your fingers. And don't go.

I totally agree - don't you be saying goodbye!

I didn't realize your fingers were so bad. I'm glad you finally have a doc that's getting to the bottom of things. *hugs*

It amazes me when I read about people getting misdiagnosed over and over again while they get sicker and sicker. I just don't understand it. What is wrong with these doctors? Are your symptoms that random that they can't put them all together and say it's______? And it is?

I'm so sorry you have had to go through all that you have. I hope they come to the bottom of all this soon and that you will be well.

Whatcha talkin bout, willis?

She has already left us. She has gone to congregate with her "own kind"

I sorry, Cathy. Much hugs to ya! Well, I sure as hope she's not just gonna hang with her own kind. I think we're all the same with different manifestations of the same thing.

Cathy...you still with us?

Pip

I am still with you, I just know I won't have much to add to a discussion about RA. And the malignant part is as in "fatal", and I believe it. Systemic scleroderma is fatal, and he confirmed yesterday I have all five of the CREST symptoms now, along with the systemic scleroderma he confirmed two weeks ago. When he used the word malignant , it was a huge mental relief, as I have been telling every doctor since 10/02 when this suddenly slammed into my right lung field and started eating me up from the inside that I thought it was killing me. (Guess that accounts for being told to see a shrink and get over my depression). Well, untreated systemic scleroderma does kill you.

I am going to be working with my primary with an intensive AP program, including IVs, as AP is the only drug that has been found to work on scleroderma, but it is still classified as a "malignant" disease. (I had to look it up in the dictionary to figure it out). But, I also now understand why I could not relate to the vast majority of posts in here re rheumatoid arthritis, or any of the other 100 forms of arthritis, as I just haven't fit the symptomology. And I also know why I responded so quickly (one week) and so well to the AP minocin.

I am very lucky to have met some wonderful people in here (mostly through pm, you know who you are) and gleaned alot of great tips about life in general. Take care ~~ Cathy
OMG, Cathy, that's horrible! But thank God you are already on the Minocin. There are a lot of success stories with Scleroderma treated with Minocin; now you will be one of them. Please stay here and trade war stories with us! Plus, since a lot of us are on the same drugs we can still share tips about that. Like Pip said, it's all different manifestations of the same thing.

It's so frustrating how you have been treated trying to get this diagnosis. It's really scary but the good news is you are already well versed in the one treatment that can actually turn it around. There are lots of SD people on RBF. I will be roo-roo-rooting for you.

I knew she would never leave, leave, leave us. We are all fasinating to her.

Glad you ain't going anywhere. I would have missed ya, and then had to email you... EWW! heheheheheheeee!! For some reason I am against emails, I do not check my email inbox until it has an even # of emails in the inbox. Sometimes just so I can check my emails, I log into hubby's email account and send myself a blank email to make it even #'ed so I can check my emails. That is why it sometimes takes days for me to check my emails.

God, that's a relief - that you're still here!

Pip

Glad you got a diagnosis and good AP treatment with IV. The founder of the Road Back Fou ndation from OH was healed of scleroderma. Praying you will be too.

Jan