Remission - what does it feel like?

[mrtmeo]

For all those that have reached remission at some point.
I would like to know if any of you notice any differences at the point you reached remission.

[Pete]

I'm in a drug-induced remission. I feel pretty much as I did before disease onset. Energy level is down a little, but that probably goes with being 68...

[mrtmeo]

I'm in a drug-induced remission. I feel pretty much as I did before disease onset. Energy level is down a little, but that probably goes with being 68...

Hi Pete,
Did you notice this difference right at the time of remission or did it take awhile after reaching remission?

[Jaypfei]

Definitely echo Pete's thoughts. I'm in a drug induced remission as well since last May. I'm not sure that I will ever feel as I did before Dx's, or for that matter look as I did. The disease certainly did damage. It is nice to be able to exercise again, not get winded or out of breath, but I have slowed down. I do get tired more easily and I can no longer just go, go, go. I don't stress too much between appointments or constantly worry about labs. If the disease comes back, then I'll deal with. I just don't spend too much time worrying about it right now.

[Pete]

Hi Pete,
Did you notice this difference right at the time of remission or did it take awhile after reaching remission?.

It came gradually. I was feeling better after my rtx infusions in 10/13, but I had to diet and exercise to get back to feeling really good. Probably took 6-8 months after rtx to feel normal.

[renidrag]

I was in drug free remission for over four years and still struggled with fatigue and SOB. However I was a smoker. I walk one mile every three days. That is pretty much it. Back on low dose pred since 8/14, no great improvement. Also have neuropathy.
Dale

[LisaMac]

Jaypfei, great advice! In over 8 years I've never returned to my old energy level. I've learned to pace myself though. If I have a big day planned for Saturday, I will be sure to rest up Friday. On bad days I do paperwork and sitting stuff. Its really OK to let your body tell you when to rest. I used to try to 'push through' but usually ended up sleeping for three days afterward.

[annekat]

I think I may be in a drug induced remission now, though my doc hasn't used that word yet. I feel the best ever since dx and am not flaring as I've done in the winters of 2013-14. But I still get the fatigue and SOB as mentioned by others above, still have mucus and coughing to deal with, all of which may vary according to how much activity and stress I've been through. The feeling of being in remission is gradual, it doesn't just happen one day. I know that at my last bloodwork my inflammation level was normal, for the first time since dx. So that bolsters my feeling of possibly being in remission. The continued symptoms may be from permanent damage to my lungs, sinus and nasal cavity structures, and ears, and those things won't change much if at all. I still have a a little neuropathy in my feet, but not as bad as Dale's; again, permanent damage or that which takes forever to heal. Since there is no cure for Wegs or other vasculitis, I would deduce that the disease is still lurking in us the rest of our lives, even if it is in remission, and most seem to be dependent on the meds to keep it there, and can't just stop them. Meds or not, it might not take much for Wegs to rear its ugly head again for someone in remission. And apparently keeping our lifestyle choices healthful and avoiding a lot of stress, overwork, or social commitments can really help a lot to prolong the remission we are in. That's my take on it, without knowing for sure if I've reached remission. I may get a better clue with my next bloodwork at the end of this month.

[renidrag]

Very happy for you Anne. I know I am not able to clean the gutters, I sure would try. The "R" word is really good to hear, hope you do soon.
Dale

[mrtmeo]

I think I may be in a drug induced remission now, though my doc hasn't used that word yet. I feel the best ever since dx and am not flaring as I've done in the winters of 2013-14. But I still get the fatigue and SOB as mentioned by others above, still have mucus and coughing to deal with, all of which may vary according to how much activity and stress I've been through. The feeling of being in remission is gradual, it doesn't just happen one day. I know that at my last bloodwork my inflammation level was normal, for the first time since dx. So that bolsters my feeling of possibly being in remission. The continued symptoms may be from permanent damage to my lungs, sinus and nasal cavity structures, and ears, and those things won't change much if at all. I still have a a little neuropathy in my feet, but not as bad as Dale's; again, permanent damage or that which takes forever to heal. Since there is no cure for Wegs or other vasculitis, I would deduce that the disease is still lurking in us the rest of our lives, even if it is in remission, and most seem to be dependent on the meds to keep it there, and can't just stop them. Meds or not, it might not take much for Wegs to rear its ugly head again for someone in remission. And apparently keeping our lifestyle choices healthful and avoiding a lot of stress, overwork, or social commitments can really help a lot to prolong the remission we are in. That's my take on it, without knowing for sure if I've reached remission. I may get a better clue with my next bloodwork at the end of this month.

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

[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.

[mrtmeo]

wow, max, 70% down to 3% is a huge improvement without some kind of other maintenance med and all the side effects that comes from them!

[MaxD]

That's why docs say that Rituxan and other mabs (monoclonal antibodies) have radically changed the practice of rheumatology.

All cheerleading aside, these drugs may not work for everyone or for other vasculitides. Also, the long term side effects remain unknown and the use of Rituxan for maintenance is an art.


wow, max, 70% down to 3% is a huge improvement without some kind of other maintenance med and all the side effects that comes from them!

[mrtmeo]

That's why docs say that Rituxan and other mabs (monoclonal antibodies) have radically changed the practice of rheumatology.

All cheerleading aside, these drugs may not work for everyone or for other vasculitides. Also, the long term side effects remain unknown and the use of Rituxan for maintenance is an art.

That's right.
We have no idea of the consequences of genetically engineered biologics in the long term.

[Barry Forshaw]

That's right.
We have no idea of the consequences of genetically engineered biologics in the long term.

Absolutely true. Alicia is living, breathing proof that it can work, but everyone has different symptoms relating to their Wegener's and may react to the treatments differently. I think we can be cautiously optimistic and keep monitoring the drugs and their side effects in the short and medium term.

[savedbygrace]

At age 18 when I first got Wegeners, drug induced remission and full remission felt GREAT! I had my ups and downs but overall I did very well on the medicine. Started a new job within 3 months of "learning" to walk again. Back to college. I came off the medicine after having good bloodwork for year after year of consistently feeling very good with no symptoms.

Fastforward to age 28 when I got my first flare... I find that the medicine makes me sick when it didn't before, I get cyclic vomiting very easily. My stomach is sensitive. I'm tired-er.
Well... I guess it's natural aging! My bloodwork looks good and I'm on track like last time. But I do feel different. Not as strong as I used to be. Maybe it's because I'm not as active as I was as a younger person. But somehow I'm more fragile now.

I guess everyone is different. I think when it comes time for your remission, you'll know when it's right.

[PattyL]

I was dx over 20 yrs ago. I was in remission for about 10 yrs then now I have a severe flare..remission is possible but a slow process. When you reach that point you will start to feel more like your old self again. I was off meds and no maintenance. It can happen.

[Donnak06]

I was in remission for 25 years and felt back to normal. I then had a small flare a year ago, they don't seem to know why it happened after all those years. I'm now on maintenance meds, cellcept and 2mg steriods. Have some good days some bad days especially when reducing the steriods.