Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Kenalog and other questions...

Hi there,

I joined the forum, sent a few posts then it went down due to the attachment issues. Since then a few things have happened with my health and I have a few questions.

The non-AS question is this:

Does anyone else have issues with kidney stones? I have passed two in the last 6 months and am not fond of the pain. Tests show that the ones I have are calcium based so I was wondering if it is common with AS.

The AS situation is this:

I had a new flare of pain in my hip joint. I am pretty sure there was swelling right in the ball and socket. After a week of moving less each day I got in to see my doctor and was given an injection of Kenalog. In 2 days I was moving normally. 9 days later I was starting to feel a little sore again and had another injection. That was 6 days ago and I am feeling great. I am actually feeling better than I have for as long as I can remember.

Has anyone else used Kenalog? And if so, what was their experience? I am wondering if a few shots have lasting affects or if it must be taken regularily.

The only side effect has been the inability to sleep. I have no pain but am awake after 3-4 hours of sleep every night. I don't know if it is the Kenalog or the repeated need to use the washroom (which is new since the last kidney stone). Either way I am getting tired.

Any comments would be appreciated,

Trevor

I have had many Kenalog injections. I do have the "no sleep" problems but I have never had a kidney stone. I would really be surprised if there is a correlation. My hubby has kidney stones a lot but he has never had a Kenalog injection. I think I would ask my dr. though. I am sure stranger things have happened. We are all so different.

Best wishes.

Possi/Joyce

Joyce,

Thanks for the confirmation of sleep issues. Is it insomnia or are you not sleeping because of pain? For me it is insomnia for the first time in my life. I'm used to lack of sleep because of pain/discomfort.

As for the kidney stones, I was wondering if it is tied with AS. The Kenalog was started after my last stone.

Trevor

Prior to being diagnosed with AS I did have kenalog shots for allergies and noticed that my back didn't hurt as bad as it did prior to the shots and did get about 6 weeks of relief from back pain, but the Dr. decided that I shouldn't have kenalog shots very often for allergies so that form of relief was gone. A few years later I was diagnosed with AS, but never was given kenalog for the AS. I haven't had any problems with kidney stones, from the experience aquaintences have had with them--don't want them either.
Big Jim

Welcome back, Trevor:

Kidney stones are strongly related to AS and in fact I was producing about one every four months at the height of my worst AS activity. After a couple of years of suffering, a friend made me listen to Dr. Wallach's lecture (Dead Doctors Don't Lie) and I went right out and got some calcium. No more stones after ten years.

That was almost five years before the NSD and antibiotics eliminated most of my other AS symptoms.

To expel the last stone a diet of raw walnuts and cranberry juice would be helpful, but you should never have to experience this again.

When I had hip problems, some steroid injections were done with only temporary relief, but after I broke my back I had many transforaminal epidurals with depo-medrol and they worked for up to 6 weeks.

I do not like using steroids because of the many risks, but they do have their place. Insomnia is one of the less severe side effects of steroid usage; if that is your only complaint you are fortunate.

I have not used Kenalog, but all steroids displace the natural hormones of the cortex, including those involved in normal sleep.

Best Regards,
John

"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

I have insomnia and I hate it. Sometimes I wonder if my sleep pattern didn't get out of whack because of being awake in pain so much. I have tried a multitude of things for pain. Did not like Ambien at all because it began to cause forgetfulness. I have a friend who was in terrible shape and seeing a neuro and ended up it was something called "Ambien coma" where she was just "doing" and not remembering anything. She was even forgetting to eat. There are no good longtime studies on that one. What I am doing now is 1 - 2 mg. of Xanax which helps me fall asleep and 30 mg. Neurontin which supposedly helps you get the right sleep level for rest. I am sleeping better. Of course at the moment it is almost 1:00 a.m. and I am up but I woke from the pain and couldnt't go back to sleep. Pain always jumps up and bites you at night when everything is quiet and you are not keeping occupied doing something.

I would be very surprised if the kidney stones were related but I am certainly no doctor. I have had an AS diagnosis for 30 years along with Lupus and various other autoimmune diseases and that is, thankfully, one problem I haven't had nor do I want. I feel for you. I have seen my hubby suffer terribly with them. I hope you and he both never have another one.

Hope you are sleeping right now!
Possi/Joyce

Hi,

had the kidney stones as a kid, painful on my own sent to my bedroom and was told aimh.......you have my sympathy for the pain ain't nice!

The Kenalog is the same stuff I just had used on my cervical facets joints, seems to be good stuff in terms of restoring movement........wish I could use it in mor eplaces myself.

It's a crystalline form and stays around longer in the intended place.....................

As for sleeping I use Valerian a herb that works on inhibiting GABA for short periods this heklps you get off to sleep and relaxes the muscles a bit. Check out any cross reactions with meds!

David

Hi Trevor!

I am going to the hospital in the morning to get x-rays for kidney stones! I hope I don't have any. I had it happen once when I was 17 yrs. old. I am 36 now. I am having some sort of kidney and bladder problems which sent me to the ER last week but one thing we know for sure is I have intersticial cystitis.

I used to get Kenalog injections every 4-6 months when I would flare up real bad. They helped alot but damaged the muscle in my hip where I was getting them. I haven't needed one in years though.

Not much info to help you. I just wanted to say "re-welcome" and ramble a bit.

Nice to meet you!

Cristina

Sorry for the delayed response. I was actually busier then expected at work this week. It was hard to actually find time to sit in front of the computer.

Anyway, thanks to everyone for their advice. My plan is this. I have had 2 Kenalog injections over the last 2 weeks with the third due yesterday. I am still mobile and relatively pain free in my hips. I am going to stop the injections to see if the inflammation is still there or not. At the same time it should allow me to sleep again. If I end up on Kenalog again I will consider Valerian or something like it to help me sleep as being busy and exhausted at work was not fun.

Again, thanks for the responses,

Trevor

Hi,

I found valerina good for about a month then it stps working but give it a break and it works again.

Valerian does n;t make me grumpy either.....not like valium....

David