Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group one thing I haven't tried

steve, or anyone else that might know:

steve, you mentioned blood sugar and musculoskeletal issues being tied.

i think i've seen that mentioned before on the internet somewhere.

i've been prediabetic since at least 2001 and probably a few years prior,
and my stuff all started in 1998.

the endocrinologist that i've seen once and am supposed to return to told me on my first visit, "endocrinology problems don't cause the kind of (tendon / ligament) problems that you have; they would only make them worse." then he went on to say he thinks i may have an uncharacterized type of arthritis.......
i've heard that one before by more than one doctor, other than the rheumatologists.

so, the question i'm wondering is: is the rheumatologist correct? or could something endocrinological (like my insulin resistance) actually be the root of the problem? (please don't answer that, no one really knows of course)

but here's my question: is there a paper or a website you can direct me to (on the connection between blood sugar and tendon/ligament problems) so i can take this information to the endocrinologist on thursday.

still looking for answers,

sue

honey, we ALL have our "rules" . . . they suck. They just effing suck. We aren't normal. We are cripples, and this is the way of the world.

I have no idea whether the Pred would work, but if you don't have bad pain right now, you wouldn't have anything to rebound to when you stop it, right? It might help . . . but I don't feel confident enough as a medical professional to actually *recommend* that lol. Especially since I'm NOT an actual medical professional.

*hugs*
-Bridget

Hi Karen,
I am shocked from your educational background, you would even consider a prednisone taper. It will probably take your pain away for sure. That is why athletes use for short term pain relief . Athletes have been known to actually walk on broken limbs when they are taking steroids. Do not take steroids, even short term. Who can predict how you will respond ? I am a steroid responder which is a bad thing. I have had every negative effect from steroids possible. Tell me again how you would even judge if steroids helped when your not in pain ?
I would highly suggest either Cymbalta or Effexor for your depression and pain relief.Wellbutrin doesn not work for pain relief . I have neuropathic pain from the A.S and this pain is so much worse then any of the A.S pain has been. What really worked was Amitriptyline, Neurontin , and Effexor. Now they use Lyrica.


Janet


Janet

Here's a crazy idea:

Could you have demonstrated this in front of a doctor?

Are these injuries visible in a way that can be measured/observed?

What would have happened, for instance, if you hit your arm with a boxing glove or something, would it have turned black and blue, more so than other people?

To answer a couple of questions-

The reason I've considered trying this is that one of my doctors actually prescribed it for me several months ago. Ti was a fairly low dose and a five day taper. She gave me the scrip and told me taking it was optional and I could decide whether to take it or not. I chose not to take it.

This doctor mentioned to me that she had done a pred taper after oral surgery and thought it helped reduce the swelling and helped with healing.

How would I know if it worked?

The science building I work in is in the midst of renovation, so I am involved right now in moving labs. Today I spent about three hours moving lab equipment from room to room. I'd load up a cart, roll it down the hall to the new lab and unload. I left everything heavy for the students to handle and I did all of the little stuff. Most of the stuff I moved weighed well under a pound and usually much, much less than a pound.

My wrists are worn out tonight from that bit of light labor. Mind you, I work out with weights. I'm not in terrible shape, but weights are different from the highly repetitive work I was doing today. Also, the twisting of the wrist involved in moving items is different from what I do in weightlifting. If I continue to move labs over the next few days, I can expect that my wrists will get worse and worse and take several weeks to settle back down. And, in fact, that is what I'm supposed to do at work for the next couple of weeks-move labs.

Now, if it really gets to be too much, I can tell my supervisor and he will be understanding, but I hate to do that, especially when I'm doing such light work.

I've wondered if pred could clear up the wrist issues as well as some of my other issues, and keep them cleared up. That's what the doctor suggested when she prescribed the pred several months ago.

In a nutshell, I'm not looking for pain relief; I'm looking for relief from my fragility.

Karen

karen,

i know, it sucks.

my hands flared this weekend from more grading than i've done in a while so its back to the contrast baths or maybe i'll pull out the new paraffin bath i bought but haven't gotten around to setting up yet. wish you could come over and use it with me.

i agree wouldn't it be nice if there were a medication we could take so we didn't have to live this way?



sue

What a precious little bunny our little lentil is.
Give her a kiss for me.

Hugs.
Possi

Hi Karen,

I am concerned that your disappointment may be clouding your thinking on this. I really agree with Steve and Janet. A Pred taper is no small med to mess around with, in absence of a diagnosis and serious pain.

In my 29 yrs with AS I have never been on steroids, not because it wasn't warranted but because of a time when my doc tossed me in hospital when my AS was massively out of control and he felt employing steroids was the only fast and aggressive enough strategy that could possibly help. And by massively out of control, I mean I couldn't walk (or crawl as it turned out), from my livingroom to kitchen about 15 ft away. I only made it half way. Plus, I'd had a bone scan result that shook my Rheumy into action.

A bad reaction (something to do with my liver or kidneys, I can't recall it was so long ago now) ... showed up in my bloodwork and was scary enough that my doc yanked me back off it! He 'rechallenged' me with another dose but the problem didn't repeat. Still, it was concerning enough to him that he's never given me steroids since that time. Now, if I ever suffer an infusion reaction they will give me steroids and we'll have to hope I don't suffer any consequences but that's a chance I'm prepared to take.

I fear the abuse of steroids by sports figures has given folks a dangerously false sense that these meds are not such a big deal but they are. They come with very real risks that should be weighed against a clear expectation of benefit.

Steroids are not prescribed for fragility, but for severe uncontrolled inflammatory pain... and surely not as a preventative measure.

I do not know what you're dealing with Karen, and wish I had the knowledge to help you figure it out... but I would be careful of what you ask for, you know the saying?

Hugs,
mig

Steroid is a general term referring to a structure with three six carbon rings and one five carbon ring arranged in a specific way. Examples of steroids include testosterone, progesterone, estrogen, cholesterol, anabolic steroids and corticosteroids.

Anabolic steroids are a class of steroids which are related to testosterone and are used by athletes to build lean muscle mass Corticosteroids are produced by the adrenal gland. One class of corticosteroid is the glucocorticoids which have anti-inflammatory action.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/06/10/SPGUBQCF7U1.DTL

Anabolic steroids and corticosteroids are quite different from one another in their chemistry and mode of action in the body.

I realize that taking a pred taper has very significant risks associated with it. That's why I'm so hesitant. That's why, though I actually filled the pred prescription when the doctor gave it to me several months ago, the pills are still sitting in my closet unused. Several times over the last few months I've very nearly taken those pills and then decided not to. Because I know a pred taper has serious risks, I wouldn't even consider taking it right now without calling the doctors at Mayo and asking their opinion.

Severe pain is a serious matter and can definitely warrant a pred taper and I realize that what I have is minor when stacked up against severe pain. On the other hand, "fragility" is no small thing. As Sue and I said, we are both very nearly at the point of being unable to function in our jobs any more. Both of us have injuries all over our bodies which refuse to heal and we are reaching the point where we are barely able to function. The reason I am not in serious pain is that I adapt or modify most activities I do and avoid many other activities. Because my job and my home life are both flexibile, I'm not in severe pain, but I'll bet I would be if I didn't have the freedom to follow my long list of rules and even if I do follow my rules, the possiblity exists that my limitations will become much more disabling. I'm a lab rat. If I can't use my hands any more, I don't have a job any more.

When the doctor wrote the prescription for the pred taper for me, she told me that taking the medication could help all of the injuries I have to heal. If they healed, perhaps they would stay healed and I would not be so limited any more. I'm not looking for short-term pain relief; I'm looking for long-term healing and the doctor indicated a pred taper could do that for me. Despite her telling me that, I still question whether the risk of the medication justifies the benefit. That's why the bottle of pills is still sitting unused in my closet.

I haven't made a decision yet, but I do appreciate everyone's input.

Karen

Hi Karen,
I am sorry that Mayo did not have better luck in figuring out what is causing your symptoms... although it does sound like they ruled out quite a bit. I am concerned that a doctor told you that a prednisone taper might help you to heal your injuries. One of the common side effects of prednisone is DELAYED or impaired wound healing -

"SIDE EFFECTS: Side effects of prednisone and other corticosteroids range from mild annoyances to serious, irreversible damage, and they occur more frequently with higher doses and more prolonged treatment. Side effects include retention of sodium (salt) and fluid, weight gain, high blood pressure, loss of potassium, headache and muscle weakness. Prednisone also causes puffiness of the face (moon face), growth of facial hair, thinning and easy bruising of the skin, impaired wound healing, glaucoma, cataracts, ulcers in the stomach and duodenum, worsening of diabetes, irregular menses, rounding of the upper back ("buffalo hump"), obesity, retardation of growth in children, convulsions, and psychiatric disturbances. The psychiatric disturbances include depression, euphoria, insomnia, mood swings, personality changes, and even psychotic behavior."

I would be worried that a pred taper would do you more harm than good. (Although it might rule out AS once and for all as pred does tend to help relieve AS symptoms - briefly anyway - no improvement, probably no AS.) I know that you have mentioned thyroid issues in the past. Did you see an endocrinologist at Mayo, or do you see one at home? Hypothyroidism can cause fatigue, joint or muscle pain and swelling of the ankles, feet and legs. Hyperthyroidism can cause fatigue, tendon rupture and muscle weakness. This sounds an awful lot like your repeated injuries.

Best of luck in figuring out your mystery illness.