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Old 10-14-2010, 12:50 PM   #1
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Raynaud's and RA

Just back from another appointment with the rheumatologist -- again more confused than ever and with more questions than before I went. One statement he made that particularly confuses me is that Raynaud's does not occur with RA. This is not what I've read. Any experiences out there?

With respect to my experience that the benefits of MTX gradually wear off between doses, he said that's impossible. Instead, he claims that MTX builds up in the blood supply and stays there long enough that even if a patient forgot a dose, they wouldn't lose the effectiveness for that week. He says what I'm experiencing is the natural ebb and flow of arthritis symptoms. At my last appointment, he stated that my 10 mg MTX is too low a dose to have any effect. Yet, when I suggested we increase the dose by one pill (12.5 mg) as a test to see if the benefits hold better throughout the week, he said no. But, he is comfortable with leaving me on the 10 mg dose since he doesn't think it will do any harm. Just in case this fellow is correct, can anyone think of medical conditions that cause symptoms similar to arthritis for which MTX provides relief?

It is so frustrating dealing with a specialist whose opinions/approach are so different from the consistent advice I'm reading from reputable sources on the internet such as Johns Hopkins and the Mayo Clinic. It seems he's waiting for me to become seriously disabled and disfigured before he takes me seriously. Fortunately, I have a referral to another rheumatologist at the end of next month.

 
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Old 10-14-2010, 01:21 PM   #2
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Re: Raynaud's and RA

I am currently diagnosed with UCTD (undifferentiated connective tissue disorder) My dr believes I have lupus, and I agree,but my labs just aren't agreeing quite yet. I'm being treated as if I have lupus with Plaquenil, Prednisone, and mtx. I'm currently on 15mg weekly. I definitely feel when it's time for my weekly dose. Right now my knees are screaming and tomorrow is my mtx day. I've been on it for about 7 weeks now. I'm also weaning from prednisone, so I'm thinking about asking my rheumy to bump up my dose of mtx to help the pain of tapering. I also have Raynauds, which definitely goes hand in hand with lupus and UCTD. Have you had an auto-immune panel run? There are 11 different signs/symptoms of lupus and you can be diagnosed if you have 4 or more. If you look up lupus online, you can see what these 11 are and see if this is a possibility for you.

Good luck!
Tina

 
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Old 10-14-2010, 01:33 PM   #3
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Re: Raynaud's and RA

Hi I learned some raynauds meds are made from snake venom and decided to stay away from the meds. Keeping hands and feet warm, wearing hats in winter and proper boots are a top priority. I have used some vitamin b-6 and vetch tea but I don't know if that made the difference for sure. Keeping proper amounts of warm and not cold water is also a priority as long as I can remember to do so. The thinness or thickness of the blood vessel in my wrist seems to tell me if I am behind on water or too cold. I try to benefit others and make them happy to help get my mind off of things and to avoid upsetness.

 
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Old 10-14-2010, 02:31 PM   #4
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Re: Raynaud's and RA

Hi Tina, thanks for your response. My GP is certain I have some sort of connective tissue disorder, and I agree. But, with the exception of a positive anti-CCP test (which has a high sensitivity for RA), my lab tests are normal -- sounds similar to your situation. I understand symptoms can precede positive lab results by several years. Based on my symptoms, and family history, the rheumatologist described the likelihood of my being diagnosed with RA at some point in the future as "very high". He has expressed reluctance to label anyone with RA due to the difficulty experienced in getting medical or disability insurance with such a diagnosis. It seems, he waits until damage is visible on x-ray.

I am aware of the diagnostic criteria for lupus, and yes, I have many of them. It is something my GP is monitoring. Unfortunately, I also have chronic fatigue syndrome which shares many symptoms with lupus, so it's difficult to know exactly what's going on with me.

Regardless of the rheumatologist's opinion, I firmly believe the MTX (prescribed by my GP) has given me back most of the function of my hands. For that, I am thankful. It sounds like it is a rheumatologist treating you as if you have lupus (despite your negative lab results). My GP believes that diagnosis (especially in the early stages of illness) should be based 80 percent on the patient's reported symptoms, and 20 percent on lab results. Sounds like your rheumy is more progressive than mine. I'm hoping my next referral is a better fit. Good luck to you.

 
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Old 10-15-2010, 09:12 AM   #5
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Re: Raynaud's and RA

Hi Sensitivo....aren't specialists maddening? They each seem to have their own opinion on everything even when the national and international authorities disagree. U have Raynaud's too. It doesn't have to accompany RA and can stand on it's own as a disorder but a lot of those with any kind of joint disorder seem to be prone to Raynaud's. I have it in my hands and feet.

And your doc doesn't take MTX so he has no idea how it works. It most certainly does wear off or the amount in your blood goes down(either way it lessens) and you do feel it. I feel when my Orenica levels are going down as well. I consider myself to be an MTX and Orencia "junkie". I crave it when it's time to take it.

I just chalk it up to someone who treats but doesn't have and doesn't even know well anyone who had these diseases. If he did, he'd know better. It's not just the ebb and flow of the disorders, it's the drugs too and the weather(they say that doesn't affect it either but it does) and emotional stress.......just about anything that can cause stress hormones to be released will make you hurt more. The weather turns cold and wet and you feel more uncomfortable and that in turn releases more stress hormones and the cycle repeats.

We know...trust yourself and what you know about your body. And good luck with the next doc. It can take time to find someone you know you can work with for the rest of your life. And you owe it to yourself to find that person.

hugs.............Jenny

Last edited by jennybyc; 10-15-2010 at 09:13 AM. Reason: spelling

 
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Old 10-15-2010, 09:20 AM   #6
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Re: Raynaud's and RA

Quote:
Originally Posted by jennybyc View Post
Hi Sensitivo....aren't specialists maddening? They each seem to have their own opinion on everything even when the national and international authorities disagree. U have Raynaud's too. It doesn't have to accompany RA and can stand on it's own as a disorder but a lot of those with any kind of joint disorder seem to be prone to Raynaud's. I have it in my hands and feet.

And your doc doesn't take MTX so he has no idea how it works. It most certainly does wear off or the amount in your blood goes down(either way it lessens) and you do feel it. I feel when my Orenica levels are going down as well. I consider myself to be an MTX and Orencia "junkie". I crave it when it's time to take it.

I just chalk it up to someone who treats but doesn't have and doesn't even know well anyone who had these diseases. If he did, he'd know better. It's not just the ebb and flow of the disorders, it's the drugs too and the weather

Cold constricts blood vessels that is why weather affects us and why extremities need protection in cooler weather. Have any of you tried or used cayenne, just curious a relative of mine used it in a bucket of warm water for her feet in the old days.

(they say that doesn't affect it either but it does) and emotional stress.......just about anything that can cause stress hormones to be released will make you hurt more. The weather turns cold and wet and you feel more uncomfortable and that in turn releases more stress hormones and the cycle repeats.

We know...trust yourself and what you know about your body. And good luck with the next doc. It can take time to find someone you know you can work with for the rest of your life. And you owe it to yourself to find that person.

hugs.............Jenny

Last edited by sjb; 10-15-2010 at 09:21 AM.

 
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Old 10-15-2010, 12:44 PM   #7
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Re: Raynaud's and RA

Hi Jenny,

Well, this particular specialist is certainly maddening, and I'm sure he finds me the same. I suspect the problem is: he's focussing almost entirely on the results of x-rays (which show OA, not RA) and inflammatory markers (which so far are negative); whereas I'm focussing on how I feel, the functional limitations I rapidly developed, and much web research. I don't deny the OA diagnosis. But, that doesn't mean there isn't something else happening. I've completed every questionnaire on the web which compares OA and RA based on my most concerning symptoms, and the result of every one is RA. Not once (at any of my three appointments with this rheumy) has he asked how my symptoms are affecting my life. When I try to tell him, he interrupts and speeds the discussion along (if you can call it a discussion). At one appointment he yelled at me repeatedly when I answered his questions with more than the simple "yes" or "no" he wanted.

I get the feeling that most of this rheumy's patients are significantly disfigured and disabled. In fact, yesterday he compared me unfavourably with his other patients, saying I wasn't like them. When I asked him how, he said something like: "They come in here with horribly deformed hands and beg me not to put them on medication. You come in here with comparatively normal looking hands, wanting to be on medication." D*** right I do. I feel tremendous compassion and respect for arthritis patients with advanced disease, but by being proactive, I'm hoping to avoid ending up in their circumstances, if at all possible. Fortunately, it seems I'm entering this disease process at a time when early intervention is seen by many specialists to be critical to maintaining as much function as possible. The next specialist I'll be seeing is affiliated with our teaching hospital, so I'm hoping she's more uptodate in her approach. At least I have the "best GP in the world" who is definitely in my corner. If not for her, I'd be totally freaked out (which I guess would confirm my current rheumy's opinion that I'm an anxious, whiny, middle-aged woman who needs counselling -- the gem he presented at my previous appointment). Yikes!

 
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Old 10-15-2010, 01:50 PM   #8
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Re: Raynaud's and RA

Quote:
Originally Posted by sjb View Post
Cold constricts blood vessels that is why weather affects us and why extremities need protection in cooler weather. Have any of you tried or used cayenne, just curious a relative of mine used it in a bucket of warm water for her feet in the old days.
sjb,

I have tried cayenne on my hands and feet (as a component of Lakota joint care topical pain reliever, which comes as a roll-on). It's hard to say if it reduced my joint pain. But, it definitely increased the burning/stinging discomfort in my feet. In fact, while on holidays I entered a hot tub a few hours after applying it. My feet felt like they were immersed in boiling water. It didn't try that again!

 
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Old 10-15-2010, 03:03 PM   #9
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Re: Raynaud's and RA

Hi SJB...I like Gardner...my hubby used to do sales routes there. I lived in Westfield for over 20 years and still see my rheumy in Springfield.

Anyhow, if I rubbed cayenne on my hands I'd die. I go into anaphylactic shock from capsaicin...the chemical that makes hot peppers hot. Developed the allergy from using those creams back in the early days. I can get my Raynauds going in the dead of summer, hands and feet. The rest of me sweats but my hands and feet are white and blue. Has nothing to do with the weather. that is the hallmark of Raynauds...that is afflicts you despite the temperature around you. You look like you have frostbite in the middle of summer. Painful.

Sensitivo......you can have OA and RA at the same time. I do. And I have secondary Sjogren's Syndrome and secondary gout. And I can tell each one apart form the other. All hurt differently, in different parts of the joint and in different ways. And my OA has caused to me to have far more orthopedic surgery than my RA. Your doc is prejudiced!

Hope you get into the new doc soon.

hugs...........Jenny

 
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Old 10-19-2010, 08:08 AM   #10
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Re: Raynaud's and RA

One winter I was dx with R/A and the same winter I started experiencing the awful effects of raynauds which I did not know what the heck it was at first but found out at the dr offc. I myself couldnot take methotrexate due to severe stomach upsets....take care.

Hap234

 
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Old 10-19-2010, 08:11 AM   #11
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Talking Re: Raynaud's and RA

Quote:
Originally Posted by Hap234 View Post
One winter I was dx with R/A and the same winter I started experiencing the awful effects of raynauds which I did not know what the heck it was at first but found out at the dr offc. I myself couldnot take methotrexate due to severe stomach upsets....take care.

Hap234

 
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