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LabLass 09-14-2018 06:00 PM

CREST/possible lupus overlap
 
I just saw my rheumy yesterday for a follow-up on blood work from 1st visit about a month ago. During the first visit, he diagnosed me with limited scleroderma based on an a of 1:1280 with centromere pattern, along with puffy fingers, raynaud s and gastro issues.
My symptoms are pain and stiffness in feet, ankles, hips and lower back, extreme fatigue, frequent flu like feeling, low grade fevers, everyday headaches etc.
Neuro diagnosed neuropathy in legs and feet with EMG and nerve conduction. Also being treated for muscle spasms in legs.
I had a ton of bloodwork done after first rheumy visit, including tests for all antibodies. Most of those came back normal. They did show slightly anemic, which I already take daily iron supplements for. U/A showed blood, leukocytes and hyaline casts.
At my rheumy appt yesterday, he said i have scleroderma with a possible lupus overlap, but offered no treatment. I have been taking 5 mg of pred since last visit. It barely does anything! 20 mgs works wonders, which I've tried before. He said he doesn't want to give me a higher dose because it could cause renal failure and he said no other treatment was necessary! I was so stunned i couldn't think straight!!! He just wants me to have a chest xray, a PFT and echocardiogram and he'll see me back in 6 months.
My question is should I be getting a second opinion?

ladybud 09-14-2018 06:12 PM

Re: CREST/possible lupus overlap
 
[QUOTE=LabLass;5488538]I just saw my rheumy yesterday for a follow-up on blood work from 1st visit about a month ago. During the first visit, he diagnosed me with limited scleroderma based on an a of 1:1280 with centromere pattern, along with puffy fingers, raynaud s and gastro issues.
My symptoms are pain and stiffness in feet, ankles, hips and lower back, extreme fatigue, frequent flu like feeling, low grade fevers, everyday headaches etc.
Neuro diagnosed neuropathy in legs and feet with EMG and nerve conduction. Also being treated for muscle spasms in legs.
I had a ton of bloodwork done after first rheumy visit, including tests for all antibodies. Most of those came back normal. They did show slightly anemic, which I already take daily iron supplements for. U/A showed blood, leukocytes and hyaline casts.
At my rheumy appt yesterday, he said i have scleroderma with a possible lupus overlap, but offered no treatment. I have been taking 5 mg of pred since last visit. It barely does anything! 20 mgs works wonders, which I've tried before. He said he doesn't want to give me a higher dose because it could cause renal failure and he said no other treatment was necessary! I was so stunned i couldn't think straight!!! He just wants me to have a chest xray, a PFT and echocardiogram and he'll see me back in 6 months.
My question is should I be getting a second opinion?[/QUOTE]
In a word, yes. With all the symptoms you have, 5 mg prednisone is a spit in the ocean. I would seek a second opinion, mainly for more aggressive treatment to control your symptoms. Prednisone is only one of several meds that can help you feel better. I think someone else may be more willing to prescribe other drugs than just increasing your prednisone dose. If you do well on 20mg prednisone, you are definitely being undertreated, and need a more comprehensive approach to feel your best. Good luck and let us know how it goes!

LabLass 09-14-2018 06:22 PM

Re: CREST/possible lupus overlap
 
Thanks Ladybud! The more I think about it and research, I know you're right. With all the tests he ordered and the fact that he actually listened to me on my first visit, I really thought I had found a good one! Very disappointing! He did redo my U/A yesterday and his nurse called today and said I have a UTI and he was prescribing an antibiotic. I have to repeat the U/A in two weeks.

luca689 09-17-2018 10:19 AM

Re: CREST/possible lupus overlap
 
Most rheumies will not prescribe prednisone to sclero patients because of renal crisis, no matter how much better it makes us feel. but there are medications that can help! And the earlier in your progression the better! Plaquenil can help many patients with the fatigue that comes along with sclero. There are treatments for your Raynaud's and gastro issues. There are treatments addressing the systemic issues as well. I have found that a rheumatologist who is either a scleroderma specialist or treats many sclero patients and treats them well is what you really should have. I have Limited too.

LabLass 09-17-2018 03:32 PM

Re: CREST/possible lupus overlap
 
Thanks for your reply, Luca! I understand about the prednisone, and have found the same in my research. I wasn't offered any treatment at all and that's what concerns me. I certainly don't want any of this, but since I do, I want the best treatment possible! There is a scleroderma center pretty close to me at a university, but they don't take my insurance. I don't know if any others. Would i sound to pushy if I would ask my rheumy to at least try plaquenil or some other treatment? What meds, if any, do you take?

istitch4ever 09-18-2018 01:45 AM

Re: CREST/possible lupus overlap
 
Hi LabLass, I would HIGHLY recommend a different clinic, if possible for you. I was sent to an RA clinic years ago by my astute Pain Specialist. Since the extensive bloodwork did NOT offer the results this clinic wanted to see....I literally was dismissed and told there was nothing they could do for me. Then I found the clinic where I now find that this well-experienced RA Doctor believes that well over 50% of her patients have RA (she uses more 'hands-on' testing to find body pain) and show NO RESULTS on bloodwork for that day. She's amazing -- and although she hasn't found the exact answer to my pain difficulties (probably because I have other issues going on) -- her willingness to try for me with various treatments is awesome.....and the clinic is not 'pushing' drugs..... So -- I'd like to believe that you would find a doctor who also believes true symptoms may not always show on bloodwork.....Good Luck....

luca689 09-18-2018 05:51 AM

Re: CREST/possible lupus overlap
 
If you have active disease, then certainly I would be asking for at least Plaquenil. It takes a while to work, but it sure helped me with the fatigue. I also take methotrexate at a pretty low dose as I am now in remission. I take a calcium channel blocker for my Raynauds. Omeprazole for the GERD, vit D, Folic Acid, all of which are pretty standard for CREST, although each patient is different. I also take various medications for my sicca symptoms, which are very common with CREST. Were I you, I would call the scleroderma center and ask them if they could give you a list of Dr's who do take your insurance, at the very least. It is good that your Dr ordered the baseline tests and all that, but I would want a game plan, or treatment plan moving forward. Not every patient experiences all the symptoms of CREST and each patient follows their own course of the disease, so it is important to be treated for your own individual experiences and symptoms. And the earlier your are treated, the better. It can help improve your outcome.

LabLass 09-18-2018 04:35 PM

Re: CREST/possible lupus overlap
 
Thanks so much, Luca! I appreciate all your info! I'm going to call my insurance company tomorrow and see if they can give me any names for sclero specialists that take my insurance. And I'm the meantime, I'll call my rheumy to talk to him about treatment. I think the main reason he said scleroderma was because I had a mild positive to RNA polymerase lll. It's just that my symptoms seem to fit more with lupus than sclero. I think that's why he said a possible lupus overlap, and he's just waiting for the bloodwork to catch up to the symptoms?


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