[Yorkiemom]

I am thinking I am going to quit taking this Allopurinol until someone can figure out if I have Gout or not. I have never been diagnosed with it. It seems to play a part in the most severe joint pain I have ever experienced...

My question is, does this work like Prednisone, where if you cut your dose back, you get a nasty rebound effect? Oh, and how long does it take to get out of your system, so that I can start from square one?

Thank you for being here. You, and many of the others on this forum are truly lifesavers with your extensive knowledge...

Cathie

[mrsD]

works on an enzyme that metabolizes purines.

I don't know any reason you could not just stop it.

You mean to say it is CAUSING you pain?

[cyclelops]

I don't suppose it has dawned on any of those wizards to run a PET scan on you??? The option is a full skeletal radiological survey OR

At the least a nuclear med, bone scan...those are always full body scans not to be confused with bone density....(just don't try to clear an airport radiation detector for a few hours afterwards)....I had to get an note once.

"Please excuse Cy for glowing in the dark and setting off detectors, she was in nuclear medicine." I don't know, when ever I travel I seem to get the seat next to the guy that looks like a navy seal, or the lady spy. Once I did sit next to a guy who they typically profile and he dug his fingernails into the arms of the seat....scared me to death, until we landed and he told me he is terrified of landing in Denver. Poor guy. I almost cracked a joke about my son's experineces landing in Baghdad, but decided to keep my mouth shut....actually caught myself before I put my numb foot in it.

Cathie, I remain unconvinced that you have gout....you did read that intestinal bacteria processes one third of uric acid...your flora has to be altered with being on an antibiotic long term.

I don't think you are out of line asking for any of the above tests......

[Yorkiemom]

Originally Posted by mrsd

works on an enzyme that metabolizes purines.

I don't know any reason you could not just stop it.

You mean to say it is CAUSING you pain?

I seems to make the pain WORSE. I am trying to recall how this happened. Regular joint pain seemed to improve, at first. Then joint pain from h*ll. It has been off and on like this since and has spread.

I read that this could cause vasculitis, hypersensitivity, or even Gout attacks when you first start it, but I would think you'd have to have Gout first... Maybe I will end up having to have a joint aspiration to see if crystals are in joints... This does NOT sound fun...
Cathie

P.S. In between ice packs, I am trying to work on a "cat" quilt...

[mrsD]

These both attack joints.

In gout, it is uric acid.

In pseudogout it is calcium:
http://www.rheumatology.org/public/f...dogout_new.asp

Allopurinol only works on uric acid.

Are you taking Fosamax or Actonel? It has been shown that these drugs for
osteoporosis, actually cause PAIN... that is something to think about also.
http://www.medicalnewstoday.com/articles/93195.php

[cyclelops]

If you have gout, you should be better from the treatment. No????

Can you call the nurse, and explain the kind of pain and LOSS OF FUNCTION (which seems to light a fire under them more), that you are having?

[Yorkiemom]

Thanks Cy... I don't know if we have any wizards here or not, if so, I have not found one yet...

I am not sure I have Gout. MrsD mentioned something about high levels of UA after an infection, and this 24h urine was taken after my round with ears, nose, lungs, etc... Also, I have been on daily Doxycycline and eat a lot of meat, not drinking like I should...

Maybe I should not have started on this until bloodwork for UA was run. I could have masked Gout with the steroids, I suppose. For most of last year, I have had a really hard time getting my dose back down to regular maintenance levels.

In his letter, he said that he felt my elevation was related to high meat/poultry intake, because urine sulfate was also elevated-whatever that is... (This is a diagnostician, not my doctor.)

What is a Pet Scan going to show? Do you have to have radioactive dye?

Cathie

[jarrett622]

Originally Posted by Yorkiemom

I seems to make the pain WORSE. I am trying to recall how this happened. Regular joint pain seemed to improve, at first. Then joint pain from h*ll. It has been off and on like this since and has spread.

I read that this could cause vasculitis, hypersensitivity, or even Gout attacks when you first start it, but I would think you'd have to have Gout first... Maybe I will end up having to have a joint aspiration to see if crystals are in joints... This does NOT sound fun...
Cathie

P.S. In between ice packs, I am trying to work on a "cat" quilt...

The joint aspiration is what's kept me from pushing for a diagnosis. I do ok with needles most of the time but that one....*shudder*

[Yorkiemom]

I did take Actonel for some time, but quit because my jaws hurt. This doctor wanted me to start on Fosamax, becase of long term steroid use, but I am afraid to take this.

My Internist is going to run more tests next week looking for some specific autoantibodies... I think he feels this is part of the autoimmune problems, and of course PN is a part of that... Maybe the nerves just don't like Allopurinol... They sure did not like the radioactive dye in the Nuclear Thyroid Scan... I had forgotten about that.

I am doing better tonight. I did skip it today and am taking some other things for pain+ice.

MrsD-good info on the Bisphosphonate site... Thanks!

Thanks all,
Cathie

P.S. Cy-the pharmacy info says that Allopurinol can trigger gout attacks at first... Internist doesn't believe I have this...

[Yorkiemom]

I think I am doing better off the Allopurinol, rather than on it. I am supposed to stay off about 10 days, then try it again. Don't know if I even want to try again, but then I have such a high concentration of Uric Acid going through the kidneys, he is concerned about stones...

Cathie