What Medication Work Best For You?

[amybeth]

What has been the best combination of medicine to treat your Lupus and symptoms?

What hasn't worked for you?

I am about to start Enbrel injections for the swelling, have any of your tried the shots? Also, rheumy and I have been discussing Plaquinel but I run a high risk of eye damage since I have glaucoma in my family and am considered a suspect. We are approaching this drug with much apprehension.

I have grown immune to most anti-inflammatory medications and cannot tolerate many pain killers.

What is the best, most popluar, successful cocktail of medication for Lupus patients? Help ...

Thank you for any experiences you can share.

Best,
Amy

[amybeth]

Teri...

Yes, Enbrel is for the RA end of this illness. I have grown immune to most anti-inflammatory meds. Plaquenil had been discussed with Rheumy but he wants to be conservative as I run the risk of eye damage with Planquenil as glaucome runs in the family and I already have high optical pressure.

Phew ... a mouth full. :)

Thanks again Teri!

[Allerian]

I just started Humira for joint inflammation, my morning stiffness after my second shot (I inject every two weeks) has been down to about 45 minutes. The goal is less than 30 minutes. My rheumy chose Humira over Enbrel because its injected less often and has had less cases of DILE than Enbrel.
Julia

[amybeth]

Thanks ... what is DILE?

[AnM]

Amy,

Hey. As Teri said- this is individual. Every1 is different when it comes to these things; U just have to figure what works best for U.

Plaquenil is a standard drug- 1 of the safest- safer than many OTC's. w/ minimal to no side effects.

I will tell u, Gloucoma does run in my family too. & I've been on Plaq. for about 11-12 years. My eyes have been ok. I get them checked every 6 months. So, if anything was to come up, it would get caught early.

That is the usual thing- that u get em checked every 6 months while on Plaq. But, Obviously every1 is different. So, I just wanted to share my experience. & I understand where you're coming from.

BTW, DILE is Drug-induced Lupus.

Metho. is another drug, oh sorry- Methotrexate. That many do use- it helps w/ joint pain. It is a chemotherapy drug, but used at a lot lower doses for Lupus than for Cancer.
& other immuno.supps.

There are different meds. out there- & it's just what u & your doc. have to figure for U, as i said. We are all different.

So, I hope u find your right mix- combo. of meds. for U soon, that will help u. There are many, to let u know, that don't need to take a bunch of meds. & are well on just Plaquenil and maybe also an Anti-inflamm.

Which anti-inflamms. have u tried, btw.?

Take care, n all my best, hon, it was nice talking w/ u in chat. :)
Alicia :coffee: :flowers:

[lin]

yes every one is differnt, i know some one who takes it with gloucoma though,. she been on it as long as me. ask your dr if you are worried hun

Lin xx

[Clare.T]

Yes ,as the others say, everybody's lupus is slightly different and so are responses to medications, so there is no treatment recipe.

These days cocktails of meds are usual to get the maximum advantage of each at the lowest dose while minimising the risk of side effects.

Maybe Plaquenil isn't right for you re eye problems, your doctors have to decide that. However I have never heard of it increasing glaucoma - Prednisone can do that.
There is an alternative antimalarial that doesn't affect the eyes called Quinacrine ( UK Mepacrine). Lupus expert doctors know that this drug is available through compounding pharmacies in USA.

I hope the Enbrel helps. These drugs isn't used much in lupus yet except for the RA sort because it can cause anti ds DNA antibodies to appear which is not a good thing although I haven't seen any actual cases of DILE reported.
Or new symptoms directly attributable to the anti ds DNA antibodies. There are many other drugs available so doctors are reluctant to take the risk.

I hope you can soon find what helps you most.

Let us know how you get on the forum's a great source of information and support
:luck: :luck: :luck:


Clare

[raggedyann1]

Amy,

As was already noted each person is different. Methotrexate is a good med used both for RA and lupus when joint pain is primary problem.

Enbrel is being used more and more with lupus patients now. My rheumy told me last year that as long as the patient has never had any anti-dsdna anti-bodies present at the positive level; they can use Enbrel with no problem.

The original RA patients that "got" lupus probably had anti-dsdna anti-bodies already present at lower levels.

Take care,
Karen

[rwb200]

With these cases it is always best to discuss all of the possibilities with your doctors and follow the advise that they give.

As many here have indicated Plaq. has worked well for many of them. However some have had severe allergic reactions to this medication and can not use it.
Lupus is very hard to diagnose because it has no standard, every person is effected diferently with it and diferent treatments work for each. In some cases treatments that work well one time will not work another.

Your Doctor is your best guide on this and your best source of information. He knows your history and your individual case.

[mcemp]

Giving others advise on how to treat Lupus is like telling them how to bring up their kids... which is of course different for each patient.

Best to discuss this with your doctor.

[KatieKat]

Hi there,
I am sorry to hear about your diagnosis, but you came to the right place for advice! There are a lot of experts on this site.
I was dxed 2 and a half years ago, and started out on just plaquenil and vioxx (obviously i don't take vioxx anymore). After awhile, the anti inflammatories have sort of worn off for me too--I am on the following treatment right now, which is working pretty well ( i am in a little flare right now, but its because i was sort of stupid and went out in the sun for awhile the other day :o ):
Plaquenil 400mg
Methotrexate 15mg/week
Lodine (anti inflammatory) 400mg/3x day
Nexium 40mg
Folic Acid 1mg
Neurontin 600mg
Ambien (as needed, 10mg)

When I'm in a flare my rheumy gives me prednisone for about a week or so, 20mg/day, then I taper off...it seems to work OK. I don't take any painkillers, even if the joint pain is bad, b/c I can't stand the nausea they cause!
I hope you find the right combo of meds for you, and stay well!

Kate