[bacardibrown]

I went to the rhumeeie and found out the im in remission how ever, blood count is very low is this why i,m still suffering with fever,weakness and head aches everyday.....and still some joint pain......

 

[lazylegs]

I can only speak for myself, I have never been symptom free even when the bloods look normal. It is more like a new normal. There are always a few lingering symptoms but they aren't wildly out of control. In most cases additional rest helps keep those symptoms from escalating.

I hope you get lucky and the lingering symptoms vanish.

Take care,
Lazylegs

 

[Katharine]

Hello there,

Again, just speaking for me too but if my rheumy were to take my bloods into account before treating me I would probably have landed in hospital several times over the last couple of years. My bloods rarely show much and certainly don't, in any way, reflect how I feel. I can have very severe inflammation issues going on and yet have little or no inflammation showing in bloods.

It all depends on whether, objectively, the symptoms you feel are "mild" or if they are more severe and seriously affecting your quality of life.

It sounds as if you could be putting up with the "new normal" but it could also be a question of looking into whether you have sufficient treatment for your disease acitivity or maybe you haven't been on treatment for long enough yet and things will improve a lot once it kicks in fully.

Also, as lazylegs mentioned, rest is extremely important in managing this disease and no amount of meds can replace it. Sometimes, through work and family obligations, we are still doing far too much and need to learn to pace ourselves more, find ways to rest during the day, leave some daily chores to others...

just some thoughts,
Katharine

 

[Clare.T]

Hello Felicia


I think you have only been on Plaquenil for about 3 months? If so, that isn't quite enough time for it to have had a full effect. I wonder what your doctor said about continuing the medicines and I agree with the others about how you are feeling being more important than bloodwork.

What aspect of the blood count was low? Did he test urine? And has he done all the usual tests, such as for antiphospholipid antibodies.

It doesn't sound at all like remission to me and in only a few months it would impossible to tell if you are as well and symptom free as possible, leading the best quality of life possible

If he just dismissed all your current symptoms and made no suggestions for further investigation or medicines, maybe you need a new doctor. Easier said than done I know Maybe your local LFA chapter has a list of specialists

All the best
Clare

 

[Maia]

I agree with the suggestion about seeking out another rheumy for a second opinion if at all possible. It is frustrating for me to hear of people being told they are in remission when there are so many symptoms and even blood counts that are low. I have to wonder why the doctor told you that -- when there is your personal report of how you feel combined with some abnormal blood test results that suggest you are not in remission.

This is a personal pet peeve of mine though - wish I had $$$ for each time a doctor mistakenly told me my lupus was NOT active based on a normal sed rate despite other signs and symptoms going on!

 

[onetay]

I can only tell you that even when I feel good there is still parts of the lupus and other things like ra that are still active. Everyday there is something that hurts on me and I have pain pills so..., I am glad that you are in remission I hope that it lasts for you. I have not had bad lab work that would say i have lupus so to me the labs are just one tool not the whole tool box if you know what i mean.

 

[Pink Pearl]

I have to agree with those who have questioned how you are determined to be in remission when you still have disease activity going on. In the 20 years since I have been diagnosed, I have NEVER been determined to be in remission. When I asked my rheumy how it was determined, he said that the disease activity has essentially stopped, and the body is asymptomatic. AND you would be off all meds and your labs would be totally normal. You aren't there. Of course, he may have a different opinion of what remission is....

I would wonder what another doctor might determine. If you can, then it may be worth another opinion.
Sally

 

[spellbinder]

hi

i;m in agreement with lazylegs and onetay. lupus is always letting me know that it is in charge. i can feel ok, do things, not as tired but there is always a sign that it there. my fatigue may not be as bad as other days but its there. i just rest as much as i can and i don't go hog wild with any activity and for the most part i feel ok, especially since i started my infusions.

good luck and feel better
hug and kisses

 

[pollianna]

yep I concur, remission seems like a nonsense to me. I have in the last few yrs had a few goodish months but have certainly never felt healthy. I find this illness to be very like snakes and ladders

In Aug my RF was 116 and I was relatively pain free but in Jan it was 59 and I was a sick as a dog and in agony. I don't think the numbers always add up I think there's a huge danger one can put pressure on ourselves and overdo things if told were in remission and land right back at square one.


Go get that second opinion if you can, be good to yourself xxx

 

[Jesse88]

All of the above makes perfect sense to me. How can you be in remission when you still feel ill? I've never heard of that before.

Time for a second opinion.