Remission - what does it feel like?

[annekat]

Hi Anne,
Please, let us know how your blood work comes out.

I will, Blake. And I'll try to remember to get a copy of it, which I sometimes forget. I don't understand as much about all the different aspects of the bloodwork as you do, and know I don't get all the tests most others get. But I'll know about the inflammation level and the other things like creatinine, which has always been normal. The doc will tell me if there is anything to be concerned about.

[vdub]

Drug induced remission -- still on mtx and pred. Some good days and other bad. Both are unpredictable. Sometimes the bad days will stretch into a week and same with the good days. Either way, never ending fatigue for the most part. However, I did have 2 very good "back to normal" months last summer. I knew they wouldn't last and they didn't. Blood tests, mx drugs, drugs to ward of the side effects, hormone drugs, pain drugs -- I get very tired of drugs.....

So, is there a difference? Will you know when you are in remission? It will be slow, but you might make the conclusion that you are in remission. It doesn't happen over night. At one point you wake up notice something is different. Less pain, less fatique, but not totally gone. I think the fatique will probably be a part of my life for a very long time.

It is probably different for everyone.

[MaxD]

I'm in remission since December, off of all drugs for now. Maintenance therapy will be one infusion of Rituxan once my peripheral B-cell rate inches up (last was 0%). More fatigued than before the disease struck. Eustachian tube dysfunction, ringing in both ears, slight hearing loss, all of which I can live with. Problems with tendonitis in left ankle, probably caused by over exertion while on prednisone. Physical therapy seems to help getting over prednisone withdrawal (stiffness in legs and shoulder, knee pain).

[annekat]

Being in remission and off all meds certainly sounds superior to being in a medicated remission. When I hear of someone on here who has accomplished that, for any length of time, I take notice. Though I realize not everyone, including me, may ever be able to do that. And there would normally still be the residual symptoms described by all of us above, I imagine, and the concern that we still could flare at some point.

[mrtmeo]

Being in remission and off all meds certainly sounds superior to being in a medicated remission. When I hear of someone on here who has accomplished that, for any length of time, I take notice. Though I realize not everyone, including me, may ever be able to do that. And there would normally still be the residual symptoms described by all of us above, I imagine, and the concern that we still could flare at some point.

Is there any indicators that tell a dr that it is time to taper off your meds because you have been in medicated remission long enuf?

[Barry Forshaw]

Alicia has been in remission for several years now. As others have mentioned it is a slow process of daring to hope that there will be no more flares. Six months turns to a year, and that turns to two years and then the precautionary checkups go from every three months to every six months then to yearly, and for some, cancelled and 'you call us if you feel unwell.'

Alicia is taking no medication other than Omeprazole. She has just had a dilatation operation for her tracheal stenosis, and she usually has two of those per year. Other than that she is just dealing with the fatigue, although that is hard to gauge with an 18 month old causing havoc in the house!

[annekat]

Is there any indicators that tell a dr that it is time to taper off your meds because you have been in medicated remission long enuf?

I don't think there are any definite indicators. It's a judgement call between doctor and patient based on symptoms, how the patient feels, whether they feel ready, consistency of good blood results over time, etc. Tapering meds or going off them altogether will always be taking a chance, I suppose.

Barry, it's great to hear that Alicia is doing so well. And you make a good point about the fatigue; there are many things that can cause it or contribute to it, besides the cumulative effects of WG.

[MaxD]

I am happy to be off meds - but it is temporary. I know I will get an infusion of Rituxan soon, and again over the next 2 years. Without any meds, the relapse rate within the first two years is 70% when sinuses are involved. A recent study in Paris found that an infusion of Rituxan every 6 months for the first 2 years reduced the rate to 3%. Instead of a daily dose of mtx or Imuran etc., my docs felt that Rituxan would be a better choice for me. So I will remain medicated for at least 2 years. After that, who knows?

I must admit that while getting off the prednisone felt like an achievement, I have been nervous since. Every tingle in the ear or minor nasal congestion feels like it could be the start of a flare. Last week I rushed to my ENT because something felt weird in one ear; fortunately everything is OK. Now I'm off on a 3 week overseas trip and I feel like I'm riding a bike and someone pulled out the training wheels and now they're going after the handle bars!

Being in remission and off all meds certainly sounds superior to being in a medicated remission. When I hear of someone on here who has accomplished that, for any length of time, I take notice. Though I realize not everyone, including me, may ever be able to do that. And there would normally still be the residual symptoms described by all of us above, I imagine, and the concern that we still could flare at some point.

[drz]

I don't think there are any definite indicators. It's a judgement call between doctor and patient based on symptoms, how the patient feels, whether they feel ready, consistency of good blood results over time, etc. Tapering meds or going off them altogether will always be taking a chance, I suppose.
.

In my discussion with my doctors on this issue the first issue was how strongly I felt about trying to get off all meds. This had to be weighed against the risk of a relapse from going med free since 80% relapse in first two years after going off all meds. In my case this risk was too high since I was lucky to survive my initial treatment. If your damage from Wegs has been light and your case considered mild then the risk from having a relapse is much less. Regular monitoring is also important to try detect any relapse early so treatment can start again to try prevent any serious damage from the Wegs becoming active again.

[Pete]

Regular monitoring is also important to try detect any relapse early so treatment can start again to try prevent any serious damage from the Wegs becoming active again.

I agree wholeheartedly. I think a monthly jab and peeing into a cup is a small price to pay for peace of mind.