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This was an AP doc. I meant to say AP in my post title but said RA instead…
We had so hoped this doc would be helpful and encouraging.
Instead it was overwhelming and devastating.
Dh has had palindromic RA for years (we just recently realized it was PR from reading here – he never got a diagnosis for it all that time :headbang::headbang::headbang:). “Became” RA and he was diagnosed last year.
He's had chronic inflammation in one wrist – very very little movement and visible inflammation for a year. Cortisone shots never helped.
Only drug he has taken was plaquenil but afer 4 months of it and NO difference, he stopped.
This AP doc said his wrist looked HORRIBLE and that he needed to really “attack” it with –
MINO, PLAQUENIL AND ENBREL!!!!
What in the WORLD????
ENEBREL? That is last line of defense stuff!
This AP doc has not read the Xray of his wrist yet (since he hasn't gotten it yet) but says the bones are already fused???? And that it's likely permanent?
I am just beyond overwhelmed! Other than his wrist, his RA is transient in other joints and he's never been wheelchair bound etc – it hardly seems as horrible as some who have RA have it (cannot imagine that and my heart just goes out to all of you on here – I have been amazed at your courage and your strength!). I'm in shock about the Enbrel…moreso that this is an AP doc RXing it….
Not to mention this may end our try for another baby – several stress filled months of trying and nothing. I cannot communicate how devastating that feels right now.
I HATE RA! I hate how it's robbed my husband! I hate how it's robbed us! I am so stinking peeved!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So sorry you are going through all this. I dont have RA but I know how Scleroderma has effected me. I can not imagine how hard this must be for you two. Just wanted to tell you I will keep you and your husband in my thoughts and prayers.
Hugsssss
Terri
[user=275]Terri9967[/user] wrote:
So sorry you are going through all this. I dont have RA but I know how Scleroderma has effected me. I can not imagine how hard this must be for you two. Just wanted to tell you I will keep you and your husband in my thoughts and prayers.
Hugsssss
Terri
Terri, thank you so much.
Perhaps try another opinion…another AP doc.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Hi Dawn,
I am soooooooooooooooo sorry! I fully understand the devestation that you feel. I was in my 20's when all hell broke loose!
Will the doc agree to treat your husband with Clindo I.V's? That should be started for now.
My prayers are with you!
Diane/WI
Ok seriously. Stop. Think for a moment.
I got a list from this board of AP doctors and chose not to go to any of them. I investigated them thoroughly and was not impressed. So I did more digging….I read around the board and figured out who the other docs are Dr. S, Dr. T etc…
I am personally travelling (flying which I hate) to see a doctor that I have researched and believe in. Have you read the book The New Arthritis Breakthrough. There are 3 main docs noted throughout the book and there are testimonials from various docs on the back of the book. Those are ones that I personally feel like I can believe it…you might feel differently…
Just cause you went to one doc that has been known to prescribe AP doesn't mean that he's the best in the field and doesn't mean that he's the one for you and your husband and doesn't mean that all is lost.
If you believe in this guy and believe that he gave you good advice and want to do as he says…great. If you have doubts then….why not get a second or third or fourth opinion and then make a decision.
It's scary and frustrating…
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Anewday – you sound at the end of your tether and I'm sooo sorry that you are going through all this. I'm not a doc but I do have palindromic RA and have had for 20+ years. It still sounds like your husband has palindromic to me. I agree with whaleharbour. If you are not happy with what your current AP doc has recommended, try another one and another until you feel happy with what you are being told. Perhaps someone on the Board can point you in the direction of an AP doc that they personally know of somewhere not too far from where you live. Meantime, try and breathe and stay focused on the decision you have jointly made, to take your husband's road to wellness in your own hands. You need to congratulate yourselves for that. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Dawn,
It's rough to get news like that, I know. If your husband was only diagnosed with RA a year ago and already has fusion in the wrist, I can see why his doctor would rx Enbrel. If there's that much inflammation in his joints, it's not likely that NSAIDS will have any effect, esp since he's seen no improvement on plaquenil. AP will not be effective if there is inflammation around the joints, and Enbrel will clear out that inflammation so that the abx can get to the affected joints.
Some people become severe very quickly with RA, and need to be treated aggressively. AP does work, and stops progression of the disease, but it does not do much to repair joint damage. I don't encourage long term use of biologics like Enbrel, but where there is severe inflammation that has not responded to other meds, it may be necessary short term to give the abx a chance to work. It stinks and it's scary, but at least it's an option that can prevent permanent damage. Keep in mind that it's only temporary.
We sometimes have to make difficult choices when dealing with these diseases. I would ask his doctor specifically why he wants to use a biologic, and also if he intends it to be a short term option or if he thinks it will be necessary to use it for long term therapy. IMO, it's still a better option than prednisone. Sorry that you are faced with these decisions.
Not to be indelicate, but I was wondering if you have considered having your husband's sperm frozen before he starts taking these meds. I have a friend who wanted children but was faced with the same dilemma; he needed to be on meds that could not be taken if he and his wife were trying to conceive. They now have 2 wonderful children and his disease is under control.
AI diseases do rob us of many things, and the stuff we do manage to hang on to often comes with difficulty and sacrifice. It makes us more compassionate and grateful for what we have. I don't blame you for being frustrated (that little headbanger emo comes in very handy)- the good news is that you are no longer wandering and looking for answers, you now know which way to go. Pin the doctor down on those questions, and go forward with hope.
If the doctor doesn't give you satisfactory answers, you may want to find another. Somehow your husband is going to have to get the inflammation under control, but Enbrel may not be necessary. Only you and your husband can make that determination. A second opinion can't hurt, and it doesn't mean you have to drop the first doctor- but you will be better informed and feel more comfortable with your decision.
linda
Thank you for all your replies. They were all very helpful!
We are more clear thinking today (well so far, it's only 6:45am here LOL) and the impact has settled down some.
This AP doc would have been a “third” opinion doc. First regular rheumy was not very helpful, so he switched to another. That rheumy was better…but you all know the frustration well when the doctor basically says, “You have RA. Take medication” and that's the end of story. Actually trying to pursue treatment of possible/probable causes are not seen as beneficial. Just take the meds….. 🙁
His next appt. is back with his regular rheumy to get an xray. I'm praying there is no bone fusion and that the AP doc's speculation was wrong – that it WILL improve.
Thanks so much for your help, again!
How many AP opinions have you had? I only percieve 1 as I read your posts.
Would it not be worth flying/driving to a known AP doctor who one hundred
percent knows and practices AP. Not one who may be dabbling with the idea
and afraid of being aggressive when the circumstances require it. It sounds as
though you 2 are a reasonably young couple, given the fact you are considering
children. I'm sure he will want to be an active father, give your future children
the best chance of having that. We all ended up here because us or someone we
know didn't give up. There are a ton of people here gaining
there life back from the minor to the most sever cases of Rheumatiodal diseases.
Hunker down, pour forth your effort into researching an AP doctor able to handle
your circumstances. Nothing good came easy
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