lab results

[Jeni]

Hi all,

I have a question about lab results: have any of you felt like hell, but had totally normal labs??? I ended up going back to the rheumatologist because I was feeling absolutely terrible. I was not only having pain and stiffness, but I was feeling “sick”. I really don’t know how else to describe it. Honestly, I was beginning to wonder if I was developing DILE….. Anyway, both my sed rate and my c-reactive protein, and all other labs she did, were perfectly normal! So, I don’t know what to think. I was feeling so terrible and my pinkie has been really getting messed up- I can’t bend it normally anymore, that I gave up and started Orencia. The weird thing is that I have never felt bad and had normal labs before. For over 20 years, if I was having pain and stiffness, this was definitely reflected in abnormal labs….

My doctor told me that she really didn’t feel that the mino was doing anything for me, and that I should just stop it. I know that it really did work for over a year, because otherwise I wouldn’t have been able to function at all! I’ve had RA for over 20 years, so I know what good and bad feel like! I am very confused. Has anyone had the experience where it just stopped working for them? I had been taking 150 mg a day, but now I am down to 100 mg. Part of the problem is that I lost my source in Canada and now I pay almost $500.00 a month for mino. And generic does not work for me. I’ve tried it twice and it trashed my stomach both times!

I am currently trying to feel better and figure out what the heck I should do. The Orencia made me feel a million times better. I did see that someone posted something about taking mino and traditional RA drugs, and that it seems to be a viable therapy. I think that my new doctor would keep giving me prescriptions for the mino if I wanted her to. She seems pretty understanding and willing to listen to my concerns. I think that I am feeling pressed to just feel better since I have to start working again soon.

Any thoughts?

Thanks,

Jeni

[Maz]

@Jeni wrote:

I have a question about lab results: have any of you felt like hell, but had totally normal labs??? I ended up going back to the rheumatologist because I was feeling absolutely terrible. I was not only having pain and stiffness, but I was feeling “sick”. I really don’t know how else to describe it. Honestly, I was beginning to wonder if I was developing DILE….. Anyway, both my sed rate and my c-reactive protein, and all other labs she did, were perfectly normal! So, I don’t know what to think.

My doctor told me that she really didn’t feel that the mino was doing anything for me, and that I should just stop it. I know that it really did work for over a year, because otherwise I wouldn’t have been able to function at all! I’ve had RA for over 20 years, so I know what good and bad feel like! I am very confused. Has anyone had the experience where it just stopped working for them?

Hi Jeni,

So sorry to hear about your flare. Two thoughts:

Did your rheumy test you for DILE? When I developed it, my labs had also pretty much normalized and I felt like crappola (see my Progress Thread link below for details on testing needed). It may be too late to run this testing if it wasn’t done at the time and results might now be abrogated by Orencia. Nevertheless, even with close to normal labs (SED, CRP, RF and anti-CCP), DILE is possible. It crept up on me over a period of a few months, so I began to think the mino wasn’t working anymore, too. 😥

My second thought was that mino won’t prevent flares from occurring. I don’t think your sig line mentions when you started mino, but sounds like you were on it for a couple years? Flares can and will continue to occur right up until remission is reached, though flares should be getting less intense, shorter in duration and spaced further apart. Brown often said it could take 2 to 5 years for remission to be reached and, in longstanding disease (20 years would be in this catagory), remission can lie more on the outside number of 5 years or more. Experienced AP docs would likely recommend IV clindamycin, too, for longstanding disease. Brown also employed other anti-micobials, so not just mino, in other words, and adding a second or even a third abx can make a huge difference. If you have a copy of the book, there is the case of a patient (Pat Ganger) who was flaring badly and he took her in to give her a round of IV clindamycin, which reversed the flare. This really is where an experienced AP doc can be invaluable, but it really depends on the patient and how far they want to pursue the therapy.

Lastly, building hypersensitivity can be an issue for some folk, especially those on daily dosing. This is essentially a overload of chronic toxins that the body has problems disposing with fast enough. The way Brown dealt with this was to halt the therapy for 3 to 7 days and then re-initiate at a lower pulsed or same daily dose. Nowadays, we know a bit more about how hypersensitivity builds and what can be done to reduce this effect with detoxification. It’s bacterial antigen (toxins) released during flares and herxing that cause inflammation in the shape of free radical damage to RAers (and any rheumatic with an inflammatory component to their disease). So, detoxing can go a long way to removing these toxins more swiftly from the body and, thus, reducing inflam and the damaging effects of flaring. It takes some research and work to learn about this and it helps a lot to work with a doctor (usually an ND, functional med, holistic or integrative type doc) who can support this process.

Also sorry to hear you’ve had trouble finding a good generic and that your carrier won’t approve Triax brand for you. This sure doesn’t help. If you find that DILE proves to be an issue for you, then doxy is a reasonable substitute. I haven’t found doxy or tetra to be as effective for me in the small, pulsed doses I used for mino and must use a higher dose of these, but my DILE issue went away by switching out and adding in some other anti-microbials.

Hope something here might help, Jeni, in your searches, and all the very best as you head out to work again!

[Jeni]

Hi Maz,

Thanks for the informative reply!

No, my doctor hasn’t suggested testing me for DILE, and I was feeling so out of it, that I didn’t even think of asking her about it. She doesn’t seem to be interested in the mino at all and seems to want me to just forget about it. I realize now, that I was slowly feeling worse and worse over the course of two months and that I just didn’t take notice until I felt terrible. I was blaming it on my thyroid issues- which recently started, and trying to finish my degree. I’ve been on Orencia for an entire month now, so I think that you’re right about it being too late to test for it. Plus, my doctor seems totally not interested in minocycline as a real option for me.

I guess I’ll just have to wait until I feel ready to tackle the whole issue again and start looking for a new doctor to help me with this. I honestly am pretty worn out with arguing and pleading my case, and being made to feel like I am a complete moron. My new doctor ( rheumatologist) is actually really great, just not interested in the topic at all. You did send me the list of doctors here that use antibiotics, but my old family doctor didn’t seem to think that the doctor that was near my area was really great. I really respected her opinion because she was the one that let me try the minocycline in the first place. My new family doctor is on leave- she’s pretty great too, but I don’t know if she’ll return to the practice. So, I guess I’m going to keep taking the Orencia for now, and figure out if I should keep taking at least some mino- I just don’t know. I think I’ll just have to sort out all my options and then decide what to do. I know that either my rheumatologist or new family doctor would probably let me try doxycycline if I wanted. I guess I just need to mull it all over for a bit. I am leaning towards thinking that it was DILE. I also have tons of blue spots all over my lower legs. I think that I started the mino a little over two years ago. I really need to learn to document these things better!

Thank you so much for your reply- it has given me a lot to consider.

Jeni

[Author]

Posts