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-   -   Sigh--complicated medical stuff going on --prob OT (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/9393-sigh-complicated-medical-stuff-prob-ot.html)

rachelb 12-20-2006 07:52 PM

Sigh--complicated medical stuff going on --prob OT
 
I don't think this is related to gluten sensitivity at all, but since you are such medical savvy people I thought I'd let ya'll take a whack at it.

I mentioned that I was dx'd with gout. Well the gout has not gone away completely and it's been almost 8 weeks. After 4 weeks, the doc gave me prednisone which didn't really change things. I started a 2nd round of it and then she decided she'd try colchicine which also didn't really change anything.

A few days after stopping the prednisone, I started getting pains in my arms that would move around and appear to be centered on veins. She said she thought it was because she took me off the prednisone too quickly. The pain has persisted and now I have some lipomas on my arms that I don't think were there before.

She's run some blood work and everything is pretty much normal (or the same as it was before--I have a kidney disease and about 50% kidney function), including my sed rate. So she's basically throwing up her hands and saying she'll give me pain meds and refer me to a rheumatologist. The earlier the rheumatologist can see me is Jan 18th.

The pain in my arms isn't moving around any more, but the veins feel tender and any pressure on my arms is painful. I can't even wear my coat that has elastic on the cuffs. The same is true of my calves and ankles now, too. Any pressure is painful--including socks are sometimes painful around my ankles.

I did discover the other day that keeping warm helps. I've been having a lot of trouble sleeping because of the leg pain and I wore long underwear to bed for the last two nights and the pain has been much better. So, even though I haven't *felt* cold, I've been trying to stay bundled which does seem to help some.

I feel concerned about waiting until Jan 18th. I feel like maybe the doc hasn't been as thorough as she needs to be. The veins in my lower arms and lower legs appear bluer than I remember them being.

So I'm toying with the idea of trying to get in to see my nephrologist and see if he has any ideas.

Anyone here have any advice?

Thanks,

Rachel (who's sick and tired of feeling rotten and being in pain) :Sigh: :Sob:

jccgf 12-20-2006 10:03 PM

Rachel,

I'm sorry you are in pain! You know, my husband is on prednisone now for a severe allergic reaction he was fighting over the weekend (included two trips to the ER). I've been told that coming off prednisone really CAN cause a lot of pain... so we've been forwarned he might feel really tired and have a lot of pain at the end. My husband had a couple IV treatments, then was on 60mg for three days, and they will be stepping him down 10 mgs every couple days, down to 10mg, and then he will go every other day of 10mg for a few days. The slower the weaning the better, I guess.

I wonder if MrsD might be able to tell you more...she pops in here to read.

With a complicated history like yours, though, I don't know what else might be factoring in. I hope you start to feel better soon!

Cara

KimS 12-20-2006 10:29 PM

Rachel,

I'm so sorry to hear that you're not doing well. It seems to be just going on and on for you.

I wish I had something good to offer but I don't have a clue. However, I will keep my eye out for you and let you know, the minute that I find something.

... and I will not confuse gout with goitre this time... :o:icon_wink:

aklap 12-20-2006 10:52 PM

Oh gosh Rachel,

How horrible :( I am surprised that the pred didn't knock that out for you. Going to the kidney doc might be worth a shot.

I hope you stop hurting soon!!

BTW - my heel is not doing much better, I'm gonna have to go back to the doc :( We are quite the hobbled pair LOL!!

loisba 12-20-2006 11:00 PM

Rachel, so sorry you are having so much pain. Someone sent me this link for info about drug-induced myopathy. I don't know if it applies to you, it doesn't mention Prednisone by name, but does include corticosteroids as a group. http://www.uspharmacist.com/oldforma...article_id=444
Hope you get to feeling better.
Hugs,

rachelb 12-21-2006 12:25 AM

Hmm, I notice Colchicine on that list for myopathy, too. I think I'm definitely calling my nephrologist in the morning, esp. since it mentions complications with kidneys and I don't need to lose any more function than I already have. Thanks, Lois!

Thanks, Cara, Kim, and Al for the sympathy! Cara, I hope your husband doesn't have trouble coming off the prednisone--I've had it before and not had this problem. Kim, I'm glad you have gout and goitre straight now. :icon_wink: And, Al, I do hope your heel is better soon!!

Rachel

mrsD 12-21-2006 07:07 AM

Rachel..
 
Do you have true gout-- elevated uric acid

or pseudogout--- which is a calcium issue?

Colchicine can be very hard on you. It is a poison you know in high doses.

Are you on Allopurinol? (for uric acid gout)

Some gout attacks respond well to indomethacin. This is a pretty tough
NSAID and not to be used if you have ulcers or any stomach bleeding tho.

Gout attacks (uric acid) can follow illnesses. Any illness that raises white
cells, can lead to a gout attack when over. As the white cells are metabolized away they release purines, which overload the system.

aklap 12-21-2006 08:37 AM

Quote:

Originally Posted by mrsd (Post 51861)
ut attacks (uric acid) can follow illnesses. Any illness that raises white
cells, can lead to a gout attack when over. As the white cells are metabolized away they release purines, which overload the system.

Would an infection where the white count was elevated to 17000+ fall into that category? :eek: :p :rolleyes:

Interesting...I never knew that. All my doc said was "It can happen when your sick". I thought it was from the CAT scan contrast.

Thanks MrsD!!


Cara - I hope Mike is doing better. How scary.

mrsD 12-21-2006 09:18 AM

don't know #'s
 
I think it is unique to each person's ability to handle the purines.

Tissue destruction also releases purines.

People undergoing chemo for various leukemias, often develop gout as
the blood cells die. It is very common to see allopurinol then, for
the secondary gout. (this differs from inherited gout, where the enzyme is
faulty.

One thing poorly understood is why one can have a high uric acid reading,
with no symptoms. What triggers the actual attack has not been fully
researched yet.

BTW a woman discovered the drug allopurinol (Zyloprim).. she was a biochemist
at Burroughs/Wellcome --now called GlaxoSmithKline. It was a metabolite
of mercaptopurine I believe.
http://inventors.about.com/library/i...rs/blelion.htm
and a picture:
http://www.achievement.org/autodoc/page/eli0pro-1
http://www.chemistry.org/portal/a/c/...944fd8fe800100

jamietwo 12-21-2006 10:49 AM

Rachel, sorry to hear you're in so much pain.

Keeping in mind that I'm vegan, I like to read Dr. McDougall's take on things. Even though I don't always agree with everything he says (he's not well-informed on gluten sensitivity for one thing), he does tend to have studies to back up his comments. In any case, I thought I'd post a link to an article he wrote about gout ... for an alternative point of view. Take what you like and leave the rest. ;)

http://www.drmcdougall.com/misc/2006nl/june/gout.htm


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