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Dr. Appointment Season


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#1 Purr

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Posted 06 November 2008 - 09:26 AM

Hi everyone,

This is my month for making doctor office visits. Yesterday I went to my rheumatologist . My CPK level is up again so I'm back on 1cc of methotrexate and 15 mg of prednisone. If that's what it takes to help me live a normal life (for who knows how long) then that's what I will do. I know the side effects of both medications and I'll take the risk. It's the polymyositis that is acting up.

Today I had a bone density test and it shows that I have osteoporosis in my left hip and bone thinning in my left arm. Funny, it's my right hip that I have trouble with. :huh:

On the bright side, my PFT results look better than last year's.

Next week I have a mammogram :P and a CT scan and possibly a nerve test on my right leg. I'm waiting to get a call from the neurologist's office.

Well, that's my news for the moment. It's a gorgeous day here. We're suppose to have rain later tonight. There go all of the leaves :( .

Everybody take care,
Christy
Love makes the world go around!

#2 Shelley Ensz

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Posted 06 November 2008 - 12:26 PM

Hi Christy,

Good luck with all your doctor visits this month. It sounds like quite a hefty batch!

It doesn't always work out, but I try to spread out my doctor visits and tests. I have a theory that more than one office visit a month is just too many for me. So I'm awful when it comes time for annual check-ups...I go for PFT one month, mammogram the next, etc. My first question is usually, how long can I wait before having this test? And generally I get things squared away just in time for it to start all over again.

So just think, you're getting a year ahead of schedule! ;)
Warm Hugs,

Shelley Ensz
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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.

#3 janey

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Posted 06 November 2008 - 01:26 PM

Christy,
Congratulations in the improvement in your pfts! That's marvelous news.

Sorry to hear about your PM acting up. That CK is such a good indicator. Glad to have something that's so easy to check. Hope the MTX kicks in quickly and you can get it back down.

Good luck on the other tests. Please let us know the results.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 canon

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Posted 07 November 2008 - 08:19 PM

Purr,

So glad you got some good news on your PFTs!! Sorry the other things have to act up on you now. Keep us posted.

With gentle thoughts.

Judy
A happy heart is good medicine.

#5 razz

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Posted 08 November 2008 - 07:05 AM

Christy,

I wish this disease would settle down and take a break, maybe go on vacation. My rheumatologist appointment is this Tuesday and I'm not looking forward to going.

I hope the rest of your appointments go smoothly! Great news on your PFT's. That's fantastic!


Hugs,
Razz
Live well, Laugh often, Love much

#6 Purr

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Posted 08 November 2008 - 07:32 AM

Thank you Shelley, Janey, and Judy for your good wishes and sympathy. I really appreciate it. The methotrexate has already started to make a difference. I gave myself my injection Wednesday and when I took a shower yesterday I didn't have to put my hand on the wall to steady myself! Amazing. PolyM is very scary to me so I'm sooooooooooo glad the methotrexate works as well as it does.

Have a blessed day.

Christy
Love makes the world go around!

#7 Peggy

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Posted 08 November 2008 - 04:00 PM

I'm glad to see someone else here dealing with the polymyositis. I too have had to battle that and the doctor has been using IVIG to combat it. I did IVIG in April, May and June and the CPK went to normal. Now in October it went back up so I did IVIG this last week and will do it again in December and January. I go in for 3 days and it takes all day. I hate it but you do what you have to do. Apparently if this doesn't work then her recommendation is to start methotrexate in January. I have a new doctor starting in January so she's leaving that call up to him. I don't know about you but I have terrible muscle pain in my legs and sometimes its unbearable. I'm on a pain patch that I wear to combat it and also take meds in addition. I was just wondering what side effects you have had from the methotrexate? Also, did it seem to work on bringing your CPK numbers down? I thought she was going to use the methotrexate for my lungs as my lung involvement is getting worse. I didn't think she was using it from the Poly???

Warm hugs,

Peggy

#8 Purr

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Posted 10 November 2008 - 07:11 AM

I saw a neurologist this morning and found out I have mild neuropathy in my feet. That's what the pain, burning, and numbness are from. She said it isn't unusual to have this with scleroderma. She is switching my anti-depressant, so for the next two weeks I taper off of my current med, wait four weeks, and then start the new one. Don't know that the holiday season is the best time to do this, but it may not bother me at all. The reason I was given the anti-depressant to begin with was to stimulate my appetite. The new med is for depression and also for the neuropathy pain. Sure hope it works!!!

Peggy - from my personal experience I can't say enough good things about methotrexate. It has helped my polymyositis tremendously and is also the treatment for arthritis and scleroderma. I've been on it for almost a year. When I first started I had mild nausea and was tired, but that eventually went away and now I don't have any side effects at all. I don't recall ever having any pain from polyM, just extreme weakness in my shoulders, arms, and thigh muscles.

Razz - let us know how your appointment goes tomorrow!

Lots of good wishes to all,
Christy
Love makes the world go around!

#9 susie54

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Posted 10 November 2008 - 10:05 AM

Hi Christy,

GOOD NEWS ON THE PFT'S. So glad for you. I have MCTD also and have done pretty well with it. I have more neuropathy than I would like and am going for a nerve biopsy and muscle biopsy to see what treatment for all of this would be recommended. I am sorry you have neuropathy also. It does hurt.

Like Peggy, I have alot of muscle pain in legs. It hurts so much sometimes. I am glad to hear of your success with methotextrate. It may be one of the ones they consider for me. Right now I am on Plaquenil and 5mg of prednisone a day. Good luck with all of your doctors. I have mine clumped together also. Susie54

#10 Peggy

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Posted 10 November 2008 - 01:20 PM

It's funny that you sould be experiencing neuropathy as that's how my disease started. First my hands and feet would tingle like the funny bone had been hit. Then they went numb. This numbness then climbed up my legs. When I finally found out it was peripheral neuropathy I was able to see a neurologist whose specialty is this. He then treated it and did all of the nerve and muscle tests and saw that I have actually have muscle damage up to my knees and it is still progressing. It was to the point that he said that if I were sitting at a fireside I wouldn't be able to tell that my feet were on fire as there was no feeling there. He wasn't happy with all of the puzzle pieces and then had me see a rheumatologist whose specialty was sclero and she then did a biopsy and tests and then diagnosed the sclero. Then just this last spring I was also diagnosed with Polymyositis in addition to the sclero, sjogren's, raynaud's, peripheral neuropathy, hypo-thyroid, and mixed connective tissue disease. It just seems like yours mirrors mine so very much!

I am so glad to hear how happy you have been with the methotrexate. Have you lost your hair in addition to the other side effects?

Warm hugs,

Peggy

#11 Purr

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Posted 11 November 2008 - 03:21 AM

Nope. I haven't had any hair loss. :)
Love makes the world go around!