Author Topic: Sjogrens treatment side effects  (Read 32281 times)

jasonsmith

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Sjogrens treatment side effects
« on: September 29, 2011, 11:52:55 PM »
Just wondering from first hand experience wondering what some common side effects are with the various treatments for Sjogrens? I had talked to someone who had eye problems from Plaquenil.

Is there anything serious that can happen from the different treatments?

I'd be worried takign the Plaquenil long term since it can cause eye problems. Is there something similar to Plaquenil that is safer?

gurs

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Re: Sjogrens treatment side effects
« Reply #1 on: September 30, 2011, 04:01:08 AM »
Ive had sjogrens for 30+ years and have tried many, many, therapies. Plaquenil is prob the mildest and the first line of treatment.
It also seems to prevent future damage...I know, I was on it for years, thought it wasnt doing anything, so I stopped it, then all heck broke loose..all my neuro issues started etc. I couldnt tolerate any of the other meds...methotrexate, Imuran, cellcept, Arava, and Rituxan and IVIG.
Im taking alot of steriods, and now dealing with all the side effects from that. Im still trying to find something I can tolerate and help me get out of bed.

When on plaquenil, you need to see your eye doc for your 6 month field vision testing, but other than that, wouldnt worry about it so much.
One day at a time.

Not many options for us really...all these medications are toxic and have side effects, but, if it helps with the progression of the disease and gets  you some quality of life, then go for it.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

LizPetillo

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Re: Sjogrens treatment side effects
« Reply #2 on: September 30, 2011, 04:06:58 AM »
Side effects of plaquinel ....

Generic plaquinel made my eyes ache.

So I switched to the real stuff.

Name brand plaquinel has not given me any issues (**Knock on wood).

Been on it a little over a year now.

gurs

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Re: Sjogrens treatment side effects
« Reply #3 on: September 30, 2011, 04:22:51 AM »
Liz, does your insurance cover name brand plaquenil?

I know its expensive?

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

mshistory

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Re: Sjogrens treatment side effects
« Reply #4 on: September 30, 2011, 05:28:30 AM »
I've only been on generic Plaquenil for a few months but have had no side effects so far (also knocking on wood).
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

anita

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Re: Sjogrens treatment side effects
« Reply #5 on: September 30, 2011, 05:32:33 AM »
Plaquenil is, by far, is the first line treatment with the least side-effects.  Almost all other treatments involve suppressing the immune system which can have significant risks....at a much higher rate of occurrence then Plaquenil side-effects. 

The eye damage from Plaquenil is EXTREMELY rare, especially on the lower doses that is taken with autoimmune diseases.   Did the person you talked to have regular eye checks?  Are they sure is was the Plaquenil?  What were the symptoms?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

irish

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Re: Sjogrens treatment side effects
« Reply #6 on: September 30, 2011, 08:00:00 AM »
Be aware that plaquenil does cause eye issues, but they are usually seen in people who are on the higher dosages used in the treatment of malaria.

Treatment of autoimmune disease required a much lower dosage schedule and we have had many people on here over the years whose opthalmologists have said that they have never or very rarely seen anyone have problems with their eyes.

The main thing is to have a baseline eye exam before or when you start the med and then every 6 months or so after. It is a condition that is usually reversible if caught early and by doing the 6 month screenings you would be catching it early.

Plaquenil is basically a very strong anti-inflammatory drug that helps treat many of the issues found in autoimmune disease. Everyone responds to it differently but most people find it helps. Some people just can't tolerate the Gastrointestinal problems that they may have. Just have to use it if you are suffering and miserable and see what happens. So far this is doing well and almost a week of plaquenil at 200 mgm a day.

Remember that fear can really inhibit our treatment of these autoimmune issues. The best thing to do is to educate yourself. Also, remember that pretty much 75% of the stuff we read on the internet is not true. There is sl much faulty information out there and we have to really be careful about what we see on the internet and what we believe.

There are just a select few of sites that are trustworthy as far as the medical information is concerned. Mayo Clinic is good and the info by other trustworthy medical centers, but many of the other stuff I have found is down right scary and dangerous. Good luck. Irish ;D

LizPetillo

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Re: Sjogrens treatment side effects
« Reply #7 on: September 30, 2011, 08:52:44 AM »
Liz, does your insurance cover name brand plaquenil?
The doctor had to fill out a piece of paper saying that I couldn't tolerate the generic and that I needed the name brand.  So yes, it is covered except for the general co-pay.  (we have Aetna)

Jenny

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Re: Sjogrens treatment side effects
« Reply #8 on: October 01, 2011, 05:17:36 AM »
I've only been on Plaquenil for a few weeks, but I have no side effects.  No upset stomach at all luckily.  Not sure if it's a cooincidence, but my back and shoulder are feeling better too.
65 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
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Scottietottie

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Re: Sjogrens treatment side effects
« Reply #9 on: October 01, 2011, 09:09:36 AM »
Hi  :)

Many, many meds can cause side effects but many, many people take them without suffering any. Plaquenil caused eye problems are incredibly rare but because it is serious if it happens it's important to have regular eye checks when taking it. Plaquenil can also raise liver readings as can Tramadol and paracetamol. NSAIDs can cause stomach ulcers and bruising and the more aggressive treatments like pred and methotrexate can do nasty things long term but not inevitably.

It's a case of trying things to see what works for you and weighing up quality of life with the alternative.

Take care - Scottie  :)
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Luna

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Re: Sjogrens treatment side effects
« Reply #10 on: October 01, 2011, 01:16:18 PM »
I have only used generic plaquenil . Doctor started me on this and I am afraid to tell him I still hurt. Don't want to move on to the others.  Only been using Plaquenil sinse June of this year. I didn't think it was helping at first , then stopped for a few days and realised it was.. The pain is still there, but not as bad without it. The only side effects I had was Diariah. Only for the first month. After that, no problems. I do notice that it curves my appitite. I do not eat like I used to. Which has caused me to loose some weight. Only ten pounds in 5 months, so Im not worried about it.

Luna

Sadie963

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Re: Sjogrens treatment side effects
« Reply #11 on: October 01, 2011, 02:28:03 PM »
I have been taking generic low dose Plaquenil for 8 mos. I just went to my eye dr. for the 1st checkup.
My eyes looked ok when she examined them but there was an issue with my visual field test. The tech brought it to the dr. to review and she said she would add it to her report for my rheum. and neither of them went over it with me. However I did see the results when the tech removed it from the machine. One of my eyes did not test well in one of the 4 quadrants. I'm still waiting for my rheum. dr. to receive the eye dr report and results.

gurs

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Re: Sjogrens treatment side effects
« Reply #12 on: October 02, 2011, 04:40:41 AM »
I was on plaquenil for around 8 years when I thought it wasnt doing anything..so, I stopped it and I got super sick about a month later.
All my neuro issues kicked in and my hair loss was super bad. It seems to really be a great modifier of SS, and some of us also need additional medications to help. I dont think Ive heard of 1 person that feels 100% on any of our treatments. Plaquenil is supposed to take up to 1 year to work as well for some, but i noticed a difference in my dry eyes and mouth right away. Maybe switching generic brands or getting your doc to write a script that indicates you can only use the name brand plaquenil.

Everything is risky...of course, if your having eye issues, that is another story.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Joe S.

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Re: Sjogrens treatment side effects
« Reply #13 on: October 02, 2011, 06:15:34 AM »
I had some rather severe challenges with Plaq and MTX so I have had to find other methods to manage the symptoms of this dis-ease. You can still live and enjoy your life. I know that most people do not like the concessions that they have to make with these health challenges. That is why I recommend "Spoon Theory" and I posted the Pain Management topic.
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aussie mum

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Re: Sjogrens treatment side effects
« Reply #14 on: October 02, 2011, 12:11:12 PM »
My daughter has tried a few different medications for her SJS with no luck - Plaquenil ( too many stomach issues), Prednisone ( extreme headaches and nightmare/hallucinations) and Sulfa (found she was allergic). Her Dr has talked about MTX but she has not tried that yet.

Luckily she is feeling relatively well (most of the time) just by treating her Underactive Thyroid and Insulin Resistance. She is not willing to try anything else for the SJS at the moment.

take care,
Aussie Mum


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