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Discussion Starter · #1 ·
Help! I have been living with RA and AS for a lot of years and coping pretty well, found the right mix of meds to control the symptoms without a lot of side effects, and don't even wince when I look at my funny looking feet any more (chewed up by RA). But over the last year there have been some weird things happening, a definite problem with photosensitivity, a flat red rash over my cheeks and bridge of my nose, purple splotches on my lower legs and feet, a bad bout of hives when we were vacationing in Costa Rica last winter (doc there said photosensitivity the probable cause since I hadn't fallen into poison ivy or been bitten by anything that I remember), and nose bleeds that last upwards of 30 minutes sometimes. I do not currently have a rheumy since the nearest one is 50 miles away, but my GP is insistent that I make an appointment - - and so far I've been operating in denial. I live in the FL Keys and the sun is getting really hot and my face even with sunscreen is getting worse. Should I be concerned that maybe lupus is in the picture? After being DXed with AS I had a hard time coming to terms with a dual DX of AS and RA within 5 years of the AS DX, and I really don't want to have to deal with yet another autoimmune disorder, but I don't want to keep putting my head in the sand either. Advice?

BTW my real name is Cheryl but that name was taken. Sugar Magnolia was the name of my favorite dog, so it's in memory of her. I truly am not a southern belle
 

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Sugar:

Welcome to the site. I am sorry that you are suffering so, I would strongly suggest that you see a rhumy. They have a great rhumy dept at the U of M, whicj isn't too bad from the keys.

I too am in south florida, north of the keys tho.

Even with SPF 70 I seem to be having more sun issues this year than ever before, wonder if it has anything to do with global climate changes.

Stephanie
 

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Discussion Starter · #3 ·
Wonder what's next is right, guess I'll have to make an appointment with the rheumy in Homestead. The funny thing is I've felt better the past few years than I did the last 20, and now this. I still feel the same (trouble sleeping, natch, early morning stiffness, hips growling, feet protesting, hands not working right, but hey, that's like normal, at least the pain is down a whole lot since I went on Arava (an RA drug that works for AS too). What I want is to rule out lupus. Funny, in the early days (took a few years to get any DX other than "It's all in your head," I just wanted a name to put to the problems. Now - - I could do with no more problems.

Sugar
 

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Sugar,

I lived in Key West when I was first DX with my disease and i have to say, there are few docs that are worth very much in the keys. My hubby is in the military and we were fortuate to get a humanitarian move back to the NorthEast to see some better docs because I had to all but dx myself while
i was there. I wish you the best of luck finding a good doc to treat you!!!!

hugs
 

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Hello Cheryl and welcome :)

Denial is a wonderful thing at times. Unfortunately we do sometimes have to sit back and look at the facts and realise that something needs to be done about it. It sounds like you do indeed need to go back and see the rheumy. Whether lupus needs ruling out or in, it would be better to know what you're dealing with.

all the best and keep us posted on how you're getting on :)

Katharine
 

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Discussion Starter · #6 ·
I was seeing an internist in Key West - - I live in Marathon so it was 100 miles round trip, and all she wanted to do was prescribe more drugs. I've been coping with diet and exercise and as few drugs as I can get by with, avoidance of prednisone whenever possible, etc. Last year she DXed my malar rash as vasculitis but did no tests, and I researched vasculitis and the DX doesn't fit - - thank heavens since vasculitis can be very serious. I just found out there is a rheumy in Homestead ( my new doc told me that), part time since that doctor also has a practice in Miami, so I'll start there. You're right, hard to find a good doctor down here, I like the one I switched to for routine stuff, and she's the one who suggested I really needed to see a specialist since it's been 5 years since I have. Thanks for replying, I appreciate it.
 

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Hi Cheryl, welcome to the site. Sorry you are dealing with so many problems. I have lupus and RA and have just been told I have cervical spondylosis as well. I hope you manage to find a good rheumy to treat you well.

Take care

Deb
 

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Discussion Starter · #8 ·
Another double whammy person. Which is harder to deal with, the RA or the lupus? I think if I have lupus (head goes quickly back into the sand) I might have had it for some time, the rash has come and gone for the past two years, it's just gotten worse over time. But there is such an overlap in symptoms, especially swelling in the joints, tiredness, even loss of hair (I blamed that on the meds, it is a side effect of immune suppressants) it makes it difficult to know whether it's a new RA symptom, a new AS symptom or something else, and I guess the photosensitivity and the rash have got me worried, can't brush them off as easily.

I think I read somewhere that spondylosis in the neck can be a complication of RA. My AS problems are in the lumber and thoracic spine, not the neck. They are currently pretty much under control, no new signs of fusion. RA? Still get those flares. Or is that lupus????? Arghhhhh!
 

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Hi,
I have one question. What is AS?:scratch:

I feel whatever "labels" we have. (meaning lupus, ra, heart failure etc.) We are living with those problems already, we are just getting a name for it. Finding out what label it is means we might get more help in dealing/controlling our problems. That is just my 2 cents.:2cents:

Take care,
Lyn
 

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Hi Cheryl

Welcome to the Forum. I just wanted to wish you the best of luck with this Rheumy in Homestead. I hope he knows his stuff. It would be great to find out that it wasnt Lupus but some other, easier treated cause. However as Im sure you know, many of these autoimmune problems overlap. I will keep all my fingers and toes crossed for you (well methaphorically anyway as it would be too painful otherwise ;))

Lyn, AS is Ankylosing Spondylitis http://www.medicinenet.com/ankylosing_spondylitis/article.htm

Take care
Joan:rose:
 

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Discussion Starter · #11 ·
AS is ankylosing spondylitis, an autoimmune disorder that fuses the spine over time. I have fusion in my lumbar spine but then the new meds started coming out and the fusion hasn't progressed. Do have a very stiff back, however. Other symptoms of AS are arthritic joints (RA is in a symetrical pattern, AS non symetrical), rib pain, heel pain, jaw pain, IBS (often AS goes along with Crohns disease, thankfully I do not have that), Reynauds, Sjogren's syndrome - - so you can see the confusion, so many autoimmune disorders have overlapping symptoms. I already have joint pain, Sjogrens, Reynaud's, pleurisy like symptoms, although on the meds the flares are much briefer, the remissions longer. The "new" symptoms are the butterfly rash and photosensitiivity, not a feature of AS or RA, plus the bouts of hives when I'm exposed to strong sunlight. Since I'm not a fan of massive doses of prednisone (once gained 30 pounds in what seemed like overnight when I was on a high dose of prenisone, took forever to lose the weight after I went off the drug) and from what I've been reading this is a standard treatment for lupus But you're right, knowledge is a good thing and it's better to rule it out than wonder what damage might be happening to my body by not seeking answers. Just frustrating to have to deal with yet another health problem.

Cheryl
 

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Thank you Cheryl & Joan for explaining and the web site.:)

AS sounds so painful.:hug: You have to much on your plate, Cheryl.

You are right that forest looks pretty thick at times.

Love,
Lyn
 

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Hi Cheryl :hug: you do have a lot going on.

Just wanted to comment on

and from what I've been reading this (Pred) is a standard treatment for lupus
Not at all, Plaquenil is the standard treatment :) In addition Immunosuppressants (i.e. Methotrexate, Imuran, Cellcept) are used if Plaquenil alone is not enough to control disease activity.

However you will see people here on Pred sometimes (short term) to get over a big flare-up. You will also see some on it long term for whom Plaquenil is not enough to control their disease and they have tried, but cannot tolerate any of the Immunosuppressants. In that situation they have little choice.

Hope this clarifies one of your concerns and I hope you can start feeling better soon.

love
Lily
 

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Discussion Starter · #15 ·
Plaquenil is also used to treat RA and AS. I was on it for a bit but it didn't do much for me. I'm was also on methotrexate and developed severe bruising so that's also not an option. I was on Enbrel and it did a number on my liver - - high enzymes which went back to normal after I stopped using it. I am on an immune suppressant, Arava, which keeps a lot of the symptoms under control, still have flares but they are briefer, and haven't had a real remission in quite some time, still stiff and sore in the morning, still battle Sjogrens, swelling in the joints, costochondroitis, hip pain that comes and goes. I guess really the only reason to rule out lupus is to monitor that disease process, along with the others. RA and AS rarely involve the kidneys, for instance, and just from my limited reading I get the impression that kidney damage is something to look out for in lupus. Doesn't look like there's any "miracle drug" out there to add to my regime, but that's why I'm going to see the rheumy. Be nice if there is something to control the butterfly rash - - on the other hand I haven't had to use blusher in some time, saving on make-up. There's always a silver lining

Cheryl
 

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Hi there again,

Yes it's best to know exactly what you are dealing with if possible to optimise treatment and be aware of potential problems.

Whilst Plaq probably didn't do enough for the RA it is very good for improving the rashes we get with lupus, helps a little with the arthralgia and mouth/nose ulcers, a little with the fatigue. Most lupies are on multi-therapies, several at a time if their symptoms warrant it. So even if Plaquenil isn't enough it's always added to not just substituted.

Good luck with the Rheumy.

love
Lily
 

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Discussion Starter · #17 ·
Good point! It's been a long time since I was on plaq, over ten years, and I had no symptoms of lupus at that time. I'm still trying to set up an appointment with a rheumy, it's tough living down here in the Keys with all the comprehensive medical care back on the mainland. There is one rheumy who has a practice in Hollywood, FL (which is near Ft. Lauderdale) who comes down to Homestead (an hour and a half from here) part time, but I haven't been able to reach her. As someone here suggested, I might be better off going to a major medical center (such as the U. of Miami) first, and then go on from there, if there's a DX find a rheumy who is experienced with lupus, and if no DX my mind will be at rest and I can continue dealing with the old familiar problems. We do have dermatologists down here, so perhaps I should just have this facial rash looked at first, that would be enough to rule out lupus, wouldn't it? (Or rule it in, but I'm not ready to really go there.)

Cheryl
 

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Hi Cheryl,

Just wanted to say welcome to the boards. Sorry it is late but I have been busy with no time to come up for air. Hope to get to know you better and join us in the chat room sometime.:wink2::wink2::wink2:
 
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