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Sjogrens, Raynaud's, and Osteoarthritis. Any suggestions?

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Sjogren's Syndrome
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Posted 4/9/2011 11:39 PM (GMT 0)
My husband has Sjogrens (Autoimmune-dry eye/saliva), Raynaud's, and Osteoarthritis. He takes Pacquinol for the Sjogrens. He also takes: Dilantin (seizures 20 years ago due to a blow to the head), and Synthroid (hyperthyroid)

Symptoms: Fatigue, insomnia, tinnitus, cold hands with poor circulation, pain, stiffness, and swelling, he's a lot worse in the last 8 months and going down hill fast.

He's low in Vitamin D so he takes 5,000 IU a day. In other posts I read that Vitamin D increases the immune system and shouldn't be taken with autoimmune drugs (Pacquinol). Is that true?

I read that Calcium Channel Blockers may help with the Raynaud's, but the side effects are really bad: constipation, nausea, headache, rash, edems, low blood pressure, drowsiness, dizziness, liver dysfunction, overgrowth of gums, and sexual dysfunction. So I'm sure hubby would prefer not to take the Calcium Channel Blockers.

Any helpful suggestions would be much appreciated.
Posted 4/10/2011 1:33 AM (GMT 0)
I think you mean Plaquenil, and there is no issue with it and Vitamin D. Plaquenil isn't really an "autoimmune drug", it just helps regulate the progression of autoimmune diseases.

Since he is going downhill, and you didn't mention, I have to ask, has he seen the Rheumotologist recently? And have all of the symptoms you listed been mentioned to his Dr? We often don't tell the Dr the full extent of what is really going on - men are particularly guilty of this.

It seems to me he should be taking some medications to treat his illnesses - like maybe some Prednisone or some pain medication - there are many options besides just letting things go downhill.

Remember just because a medication, like a Channel Blocker, has side effects that doesn't mean a particular person will have any of these effects.

I'd suggest 4 basic actions: eat healthy foods, get good restorative sleep, get some mild exercise, and see the doctor. No reason to suffer in this day & age!
Posted 4/11/2011 11:54 PM (GMT 0)
Thank you for your response.

Yes, he has seen several doctors recently including his Rheumotologist. He's told them all of his symptoms. He's concerned about his liver if he gets on too many Prescription medications (and all the side effects). Our General MD gave him a prescription for sleeping pills, but they made him feel like Gumby and he didn't take them again.

Most of his painful issues I think are the result of his Raynauds and Osteoarthritis in his hands. He can't make a fist and his hands are swollen most of the time.

He has gotten some relief with the steroid injections, but it doesn't last long. He's tried Boswell for pain, but mostly just uses Ibuprofen. He takes the Glucosamine etc. Krill Oil, Flax oil, multi. I'm glad to hear it's not an issue for him to take the Vitamin D3.

He tries to eat healthy, but still consumes some sugar.

Since it is his immune system attacking himself do you think it's ok to take vitamins/herbs to boost the immune system? Is that bad?
Posted 4/12/2011 1:29 AM (GMT 0)
If he is taking a medication to suppress the immune system, then you DO NOT want to do anything to "boost the immune system". You would just be negating what the med is trying to do.

It's very important to verify with his doctors before taking vitamins/herbs as they may counteract with what his meds are supposed to be doing, or with something the Dr is testing his response to.

Even drastic changes in diet should be cleared with your doctors -- they really are the experts. (I think I read there are some vegetables that are not good for OA, but not sure about that.)
Posted 5/1/2011 7:40 PM (GMT 0)
For any who suffer from Raynaud's, I just this year discovered the finger warmer and toe warmer packets used by hunters and skiers.  Here in the cold midwest, they work great inside my mittens and boots.  No more white fingers every time I leave the house.  You can usually find them in the hunting section of Menard's.  Some hardware stores also have them.

Atin

Posted 5/3/2011 3:50 AM (GMT 0)
I'm so sorry to hear that your husband is in so much pain. I can understand. I have sjogren, RA,low vit d and thyroid problem. Have your husband been given a muscle relaxer. I know that my muscle relaxers really help. I'm still having a lots of swelling in my hands. But I have a doctors appt tomorrow I no longer want to take steroid . Because it makes me gain weight really fast.
Posted 6/24/2011 2:28 PM (GMT 0)
Plaquenil is used for RA and some types of autoimmune diseases. Plaquenil is a big use for Lupus patients. Some RA's do use it for these types of autoimmune diseases, but not everyone has a positive response or may have allergic reactions that creep up on you. I took Plaquenil and it closed my throat and strain my neck so much I had to go to the ER because of the pain so this one an allergic reaction to Plaquenil so I had to stop it. I was prescribed this for my RA. Bummer.
Posted 7/11/2011 9:53 AM (GMT 0)
Hi There,

I have Raynauds and sjogrens disease in all everything involved with Lupus, i'm under a great Dermo but i can't say much for Rheumo and he's got me on plaquenil 200mg daily because of my other drugs i take.
Refering my Raynauds it's that bad with the SLE i'm banned from going out in cold weather and also the shade in the summer as i have bad flares. Vitamin D is needed in our system's as the Disease it's up up quick and refering plaquenil it's mainly for the skin and only suppress's the immune system Lightly, there's a battle going on at the mo with my dermo and Rheumo as they want me on Dapsone with methotrexate as my immune systems is affecting my organs now and have just found a Tumour on my liver.

Refering calcium channel blockers your husband Doctor or Dermo should know the best for him and the Rheumo should have him on something alot stronger.

Terry
Posted 7/23/2011 7:39 AM (GMT 0)
The only thing I've in common with your husband is I have Raynauds too. I have tried the Calcium Channel Blockers, and they did not work for me. I did not suffer any of the side effects that you listed so maybe they won't be so bad if you had to try them.

Another thing you might want to try if you have Raynauds is Cayenne. That's what I use when I find I lose circulation in my hands. I make a bit of a hot drink out of it and I can sure feel the blood return to my fingers!

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