Am I out of the woods?

[Curly]

:D Hi all, I went to see my wonderful rheumatologist yesterday (I see him 4x's year) and we got to talking about lupus (imagine that). He told me that as a general statement if you ahve not had major bad stuff within the first 2 years than you most likley will have a milder form. I asked about coming off the plaquenil ever and he said NO as studies show that people can become very ill if they stop taking it, so he said its mine for life. Then he said I'll see you in 3 months. any thoughts on any of this? did your doc's ever say the 2 year thing? just wondering.Curly

[alobreto]

Hi, Curly! ;)
I haven't heard that before, but the way you say he said it, he didn't mean it as a hard and fast RULE. In other words, his estimation is of a likelihood and not an absolute certainty.

His experiences give him a particular point of view which may or may not match the bigger picture. Did he have any studies that supported his assertion? Or was it presented as simply his opinion? It would be interesting to find out.
Best regards,
Angela :flowers:

[geogirl]

Hi there

My Rheumy said the exact same thing to me. She said that they say (Doctors) that the course you take with lupus in the first 2 years in general determines the overall course. So for me, mild in first 2 years means I should have few big problems.

However, I just got the new edition of the Wallace book and he mentions this statement in their, and says it is not true.

As usual, conflicting views but I would tend to follow Dr. Wallace as he is the expert on Lupus.

Debbie.
:wave:

[Deborah Rumbles]

:jump: Hiya I have SLE and was on plaquenil for 6 years but I'm off it now as I had to change the drug as it had stopped working for me,I developed further complications like nephiritis anyway I was never told that you should not come of Plaqenil,I am not on any of the antimalaria drugs,I'm on Methotrexate,prednisolone,Tramadol,Nabumetones and also Uniphylinn and Montelukast for asthma,as well as inhalers, My SLE effects me in the following ways,Joint pain and stiffness,extreme sun sensitivity,hairloss patches, malar rash,tiredness,raynaulds,SS and Fibromyalgia also. When I was first dx I only had extreme tiredness and joint pain,malar rash but over 9 years have developed the rest,but remember we are all different,and I have had asthma all my life.Deborah :notlook:

[Lily]

Hi Deborah,

I'm curious as to how your doc determined the Plaquenil was no longer working for you as opposed to your disease worsening and you needing to add another med as many of us do?

Many still take Plaquenil along with their other meds for the benefits it gives and it could certainly help with the joint pain & stiffness you are experiencing? It also helps cut down my sun sensitivity - I mean I'm still very photosensitive but nothing like I was before I was on it!

Just wondering.............

love
lily

[Deborah Rumbles]

:wave: Hi Lily, to be honest I don't know why it was stopped, he kept increasing it to the max level, and I was suffering really bad with my joints so I was put on Methotrexate as my Dr thought this was the best plan,and it really has helped with the joint pain but I still have to use a mobility scooter to go around my neighbourhood, so although I feel a big change it's not totally stopped the joint problems,as for the sun sensitivity I was prescribed factor 65 from dermotologist and I wear it everyday, sunny or not.This has helped although I still get sick with the sun.Dr also said that the plaquenil had stopped doing me any good as my body had become so used to it after 6 years, it's hard to know for certain as I don't get told a lot infact do Drs keep things from everyone? Deborah :rolleyes:

[raggedyann1]

Deborah,

What I find intriguing is the term "stop doing you any good". Methotrexate is awesome for joint pain with lupus, I took it in the early 90's and have been on it again for the last 2 years. The first time in the 1990's my doctors think the combo of methotrexate and plaquenil put me in my long term remission.

The normal theraputic dose of plaqueni is 400mg. Doses of 600mg and 800 mg can only be used for short terms as those doses really increase the chance of retina involvement.

Methotrexate suppresses the immune system to get lupus under control. Plaquenil actually slows lupus down, it changes the ph balance of the cells which keeps the lupus from attacking those cells.

Some doctors after a few years will lower plaquenil to 200mg as a maintenance dose to keep the ph balance of the cells and therefore continues to keep the lupus from entering those cells.

Which is why some of us are confused with the term "stop doing any good". And why some questions to you about your treatment.

Take care,
Karen

[Deborah Rumbles]

:erm: Hi, I am actually quite confused myself now, so I will have a word with GP,all I was told was my body had grown so acustomed to Plaquenil as I'd been on it for 6 years,but I'll get back to you all soon,once I get an answer form Dr,Cheers Deborah

[jude mack]

Hi
Sorry I'm with Terri on this one. If the 2 or 3 year thing where true, I should have been home free a long long time ago. But who knows for sure. Jude :flowers:

[hurley]

I don't believe it either.

[teachmom]

I recently read several places that if you are going to get kidney involvement, it is most likely within the first ten years after you are dx so that kind of disprooves the two year thing.

Amy

[raggedyann1]

Hello all,

Dr. Wallace says that after 5 years with NO organ involvement that there is only a 5% chance of getting organ involvement.

Karen