New here... so many issues.. also Q re Plaquenil

[amum]

Hello everyone,

I am a longtime sufferer of severe Endo, PCO, had first stages of cervical cancer removed 17 yrs ago (total of 11 surgeries incl laparotomies), have MTHFR, and now after a severe attack hospitalising me for a week (literally crippled me within hours), am also diagnosed Lupus, Rheumatoid Arthritis, and they are still testing for other diseases they suspect. They have me labelled as acute, and mix-collaganose.

I have a son who was my 5th IVF, we had 3 early m/c prior to him. Pg was extremely difficult with almost losing him a few times, hospitalised and bedrest most of it. He truly is my miracle and I know fully how lucky I am to have him.

We were about to do a FET when this attack happened, obviously cancelling.

They put me on 30mg cortisone but had to lower significantly due to the adverse reactions I had on it, and the incredible strain it put on my heart. They are wanting me to start Plaquenil in Jan. I am so frightened of this drug. Has anyone here been on it? Could you pls share your experience with me? I tend to have extreme adverse reactions to meds, which is why I am so frightened of this particular one.

I guess I am just asking if there is anyone else out there in a similar situation to me? I also thank you in advance for any insight..I just feel so incredibly lost, and frightened of my future.

amum

[Tabithalyn]

Amum,

I'm so sorry that you are going thru such an extreme time and hardship....

I'm not familiar with the Plaquenil med at all --I can search the site here to see if others have any info on it or research it a bit more.

I know that it must be so scary but hopefully the docs will not administer anything without taking extreme precautions to monitor you.

I'm also wondering if you've ever thought of being treated with IV antibiotics for the condition(s) you have described that may also be affecting your body to react in such extreme auto-immune type conditions.
here is a link addressing how a form arthritic (reactive) c/d be linked to bacteria built up and how there is theory out there that most arthritis is based upon bacterial build up attacking joints...

http://www.niams.nih.gov/hi/topics/r...tive.htm#rea_b

take care and keep as positive as possible, it all can seem overwhelming I know ...
Ally

[Tabithalyn]

here is info on the med that I found at the site here:

The medication i am on is Plaquenil....or Hydroxychlorquine...i believe it is an anti inflamatory. I'm definately going to ask about the LIT!!! I kept wondering if my body was rejecting the babies because of my Dh....that makes so much sense!!!! Oh i'm going to beg him to do the LIT!!!

Here's what i found on the med i take...hopefully it will help me now that i'm back on it!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Plaquenil is an anti-malarial drug which has remarkably different and often divergent actions, e.g.

It helps block ultraviolet light from damaging the skin
It has an anti-inflammatory effect similar to that of an NSAID
It lowers chlosterol levels by 15 to 20 percent
It inhibits clotting
It blocks certain pro-inflammatory cytokines
It alters the ph balance of our blood cells, which limits their ability to process antigens. (Antigens – the enemies- are a substance, usually a protein, on the surface of a cell that stimulates the production of antibodies. In people with Lupus, our bodies cannot tell the difference between the antigen and the antibody and our system goes into overload – producing too many unnecessary antibodies. Once our bodies set up an immune reaction we attack the good guys and the enemies equally – hence we can get inflammation and damage anywhere in the body)
As Plaquenil changes the ph balance of our cells, the lupus antigens (the enemies) will no longer enter that cell. Altering the ph balance of cells takes time before a significant effect is noted. Over several months Plaquenil is able to change the ph balance of a good portion of the cells in our bodies. This then will slow down the course of lupus. It has the potential to slow down lupus wherever it has affected us

[amum]

Thankyou so verymuch for your replies! I have researched the Plaquenil, and the side effects are what absolutely terrify me. As well as the fact that I have it LONGTERM.

The Dr's are being VERY careful with me, and are frully aware that I am a difficult case, so taking things step by step. They are monitoring me closely, taking a huge amount of tests, and I had a huge amount done in the hospital as well as CT's MRI's etc, etc...

Thankyou for the information and I will read up on it more. My next appt with the internist/immunologist is Jan 8th.

Again, thankyou so very much for taking the time to reply.

Amum

[bags]

I am a huge Plaquenil fan, particularly for people with lupus and/or rheumatoid arthritis. Of all of the medications to treat these illnesses (including cortisone/prednisone), plaquenil is the easiest to take with the fewest side effects. Most people tolerate it extraordinarily well. It does not put you at increased risk for infection like cortisone or any other lupus/ra drug does. It won't hurt your kidneys or liver, like some of the other meds can. It won't give your diabetes, hypertension, insomnia, or osteoporosis like cortisone will.

I'm not sure where the description above came from... not entirely accurate but fairly close. It does seem to alter the functioning of the immune system, probably inhibiting the ability of your T cells from recognizing self-antigen inappropriately (this is the main problem in lupus -- your immune system is confused and thinks that it should attack you).

Plaquenil is sometimes called "lupus life insurance" -- it has been proven to decrease the frequency of lupus flares, as well as decreasing the risk of brain or kidney disease from lupus (the worst parts of lupus) and it has been shown to decrease the risk of death from lupus. Most specialists believe that all patients with lupus should be on Plaquenil life-long. Indeed, it is a long term medication, but unfortunately lupus is a long term disease without any cure.

Plaquenil is considered safe in pregnancy. There have been no congenital anomalies linked to plaquenil, despite many women with lupus taking it during pregnancy. When we compare women who stop Plaquenil for pregnancy to those who continue it, we find that the women who continue it do better as their lupus stays quiet and they have less inflammation.

Overall, my recommendation is to TAKE THE PLAQUENIL!! The side effects of Plaquenil are very rare -- but I can guarantee that you will have side effects from the cortisone (in fact, sounds like you already have!) Only monitoring required on Plaquenil is yearly eye exams to prevent the VERY RARE complication of deposits of the drug on your eye. This happens in less than 1 in 5000 after being on the drug for over 5 years.

I hope that this helps...

[amum]

Thankyou so much Bags. That has put my mind at ease somewhat. The cortisone has been terrible for me, so I am hoping (now that I have read your post) it will be a little easier. I am just really sensitive to meds and if there are side effects, I tend to get them,making it all just that much harder.

I am however not wanting to take these drugs during pg if I am indeed fortunate enough to be able to do another IVF sometime next year. I am too frightened to take meds that *could* affect the baby.

Again, thankyou!!

[Patience]

i have lupus and plaquenil is a life saver for me...i havent had any side effects from it... good luck from one lupie to another...