Author Topic: UPDATE (4) : Goodbye AZT.. Hello ddi - Myalgia (or PnP or Reiter's Syndrome) (Read 12761 times)

LatinAlexander · « **on:** January 20, 2007, 08:16:54 pm »

Hi All :

Well, It seems I have more things than I thought. Suddenly, one week ago, I had this weird pain in my knees appearing. Then 3 days later, It is in my elbows. Today I couldn't take it anymore (Cause I had taken a lot fo Tylenol), and called my ID doctor. He sounded kinda worried. He says it could be Reiter's Syndrome/Reactive arthritis...

He asked me to go to the ER... But i couldn't.. My state of mind, kinda took me to a shower, and to sleep all the afternoon. I am thinking on going now... (It's like 9 pm)

Just wanted to share some bad news with you

Alex

allopathicholistic · « **Reply #1 on:** January 20, 2007, 08:20:04 pm »

Quote from: LatinAlexander on January 20, 2007, 08:16:54 pm

Suddenly, one week ago, I had this weird pain in my knees appearing. Then 3 days later, It is in my elbows. Today I couldn't take it anymore (Cause I had taken a lot fo Tylenol), and called my ID doctor. He sounded kinda worried. He says it could be Reiter's Syndrome/Reactive arthritis...

hey alex - hope it's not that - hope it's something minor. so the pain "moved" or is the pain in your knees AND elbows?

LatinAlexander · « **Reply #2 on:** January 20, 2007, 08:20:56 pm »

In both of them Alex... In both of them.

Alex

Ihavehope · « **Reply #3 on:** January 20, 2007, 08:25:16 pm »

Hey Alex

I had some knee pains that lasted about 3 weeks about 2 months ago and it hurt alot especially when I walked. but it went away pon its own after 3 weeks. My doc said it may have been related to a herpes outbreak. How and Why ? Dunno but he said he has seen it happen to people with HIV have a herpes reaction and your knees hurt. I took some cranberry pills for the Urinary Tract infection and that and the knee pain went away. Don't worry too much about it. Maybe it something that will go away on its own. Keep us posted.

allopathicholistic · « **Reply #4 on:** January 20, 2007, 08:32:28 pm »

maybe keep a symptoms journal to help your doctor. in the journal, list the times of day the pains get bad (the doctor might recognize some sort of pattern), or if the pains get bad when it's rainy or any details you think you won't remember. if the doctor asks you lots of questions, then you have something to give instead of relying on memory

J.R.E. · « **Reply #5 on:** January 20, 2007, 08:39:59 pm »

Hello Alex,

Just want to add. Be careful of how much Tylenol you take. Take it only as prescribed on the label. Don't overdo it with the tylenol, it can be dangerous.

Ray

koi1 · « **Reply #6 on:** January 20, 2007, 09:11:23 pm »

Hi,

I hope that you are feeling better. Please let us know how you are doing.

rob

Life · « **Reply #7 on:** January 20, 2007, 09:15:04 pm »

Alex, even if its your ID doc's speculation, I would await a face to face proper diagnosis and not via the telephone... Prayers are with you my friend. Please let us know how you are doing... Easy on the Tylonol!

Lots of Love,

Eldon · « **Reply #8 on:** January 20, 2007, 09:57:51 pm »

I just wanted you to know that I pray that everything works out for you.

"What Can I do today to make a better Tomorrow?"

skeebo1969 · « **Reply #9 on:** January 21, 2007, 07:53:53 am »

Alex,

I have been having this same issue myself. Do not take Tylenol any more for the pain. Here is my thread on the subject below:

http://forums.poz.com/index.php?topic=7379.0

I also looked up Reiter's Syndrome last night upon seeing your thread and was pretty sure this may be what I am suffering also. It seems harder to diagnose than treat which I consider a good thing. Treatment for it seems pretty basic to tell you the truth. At least your doctor is looking down this avenue and I do believe mine is also due to a test for clap on my last blood draw. I had ruled Reiter's Syndrome out because on Nov. 15 2006 I came back negative for all STD's including clap, however last night I read that their are other causes that can bring this on. Food poisoning is one of the possibilities and I had suffered from it about 4 months ago. Reiter's is caused by a bacterial agent from what I have read and can afflict the joints in the body.

Here is a link for more detailed information for you:

http://www.arthritis.ca/types%20of%20arthritis/reiters%20syndrome/default.asp?s=1

I am really glad you shared this info with us, allopathicholistic sent me a heads up (PM) about your thread. The pain is terrible I know. I have not slept for more than 2-3 hours at a time for the last 2 months and it is wearing on me. You know, surprisingly, when I first started taking Bactrim in November the pain subsided greatly! It only came back when I followed my new doctor's orders to only take Bactrim Mon, Wed, and Friday... as opposed to everyday. I am putting myself back on it daily now! Luckily I have enough to do so and the only reason my doc told me to cut back is because of my complaints on night sweats.. She is not an ID doc so I really don't think she has a clue. Could be in my head, but after 2 days in succession my knee pain has lessened.

Like I said before stop taking the Tylenol for the pain. You need an anti inflammatory. I take 4 200mg Ibuprofen and they help. I believe Motrin would help also, but I am only guessing it is an anti inflammatory also (I think I am right).
You can take up to 800mg, just make sure you do so at 12hr intervals. I only do so in the morning and at night before bedtime. If you read the link above on Reiter's I think it may give you a little peace of mind.. It's not that bad really as long as your doctor is aware that it could be this. Like I said before, it looks to be easily treatable.

I hope this helps... You've helped me just by posting about it.

Thanks!

Thomas

LatinAlexander · « **Reply #10 on:** January 21, 2007, 10:21:49 am »

Good morning everybody!:

I went to the doctor last night.. I LOVE MY ID SPECIALIST!!!!... He was there, waiting for me to come in a saturday night.. I just went to the ER, gave my name, 5 mins later, they were calling me, and my ID was there with the ER doctor (a nice girl, BTW). They gave me a shot of Ketoprofen, and the pain reduced substantialy in one of my knees, and a little bit on the elbows. They also ran some blood tests, to find our if I had other internal symptoms of Arthritis....

One hour later, results came back. Everything was fine on the labs.. However, my ID doctor told me he wants to see me tomorrow, and the ER gave me some ketoprofen pills, to control pain.

So, it seems that something is happening inside of me.. But arthirtis has a low probability right now...

In short, gotta rest today, I LOVE MY ID, and gotta go to to see him tomorrow.

I hate uncertainty.... I'd like to know better what the hell is this thing.

THANK YOU ALL FOR YOUR KIND WORDS

Alex

Life · « **Reply #11 on:** January 21, 2007, 10:26:32 am »

Alex, lets hope this all settles down for you honey....

Love

keyite · « **Reply #12 on:** January 22, 2007, 07:45:50 am »

I had a Reactive Arthritis outbreak about 15 years ago (used to be called Reiter's Syndrome but this is falling out of favour because it emerged relatively recently that Reiter was linked to the nazis during WWII).

My knees were primarily affected and I could barely stand or walk for about a month. Knees were very swollen and at one point they emptied out quite a lot of fluid due to the inflammation from them. RA is often also associated with conjunctivitis, balanitis (rash on the head of your dick) and rashes on feet/hands (the latter I didn't suffer from). Treatment at the time was a long period of doxycycline as well as indometacine (until my stomach could not tolerate it anymore) and then ibuprofen.

I still have occasional onsets of mild arthritis in finger joints but otherwise I have not suffered any problems since that initial attack.

I'm no doctor but my general impression (and it certainly applied in my case) is that RA is characterised by symptoms that come on quite suddenly and quite strongly - and then mostly fade away slowly over months. I really was in no doubt something major was up!

Hope that helps...

LatinAlexander · « **Reply #13 on:** January 22, 2007, 09:17:48 am »

Hi all:

Well, situation doesn't seem to be improving... The pain is worst when I wake up. Ketoprofen is not doing the trick anymore. The pain and rigid feeling is increasing, and now I have pain in the lower part of my legs (the muscles, in my calfes area)...

I'll go to see my doctor again tonight....

I HATE HIV!

Alex

Life · « **Reply #14 on:** January 22, 2007, 09:32:40 am »

Alex, all I can say during this time of uncertainty is to stay STRONG and TUFF. Do not allow this to get in the way. DO NOT LET IT.. Your a young and strong man and THIS TO SHALL PASS. You are stronger than you think... Do not forget it.. Get the docs to figure this out for you. Do what they say, and have faith that things will be better again.... and again, and again if need be..

Love

allopathicholistic · « **Reply #15 on:** January 22, 2007, 11:07:21 am »

yup, be strong, it won't last forever. you've got us, and your friends in Colombia. sending much love honey

ademas · « **Reply #16 on:** January 22, 2007, 11:22:10 am »

I don't know much about Reactive Arthritis, but I do have psoriatic and rheumatoid arthritis.
The only advice I have is keep on top of it, like you're doing. There are lots of effective treatments now, but they all have one thing in common: They can't undo damage to your joints. You need to be agressive in the beginning, before any permanent damage occurs!
Keep on keepin' on those docs!

ndrew · « **Reply #17 on:** January 22, 2007, 06:25:33 pm »

Hi Alex,

Thinkin' of you and hopin' this clears up soon. Sorry for your pain.

Drew

LatinAlexander · « **Reply #18 on:** January 22, 2007, 09:05:20 pm »

Came back from the doctor.... He says it is not arthritis... But Peripheral NeuroPathy (PNP).. He sent me to the Neurologist specialist, and have an appointment tomorrow...

If things do not improve, he said, he suspects combivir is the guilty one... And I would have to change it for abacavir or any other thing...

I am so pissed off, so depressed, so angry... Why not making this easier for everybody, and die at once?

Me.

Life · « **Reply #19 on:** January 22, 2007, 09:59:22 pm »

Alex, getting the right meds for you is a process. I would talk with Blixer (David) and let him explain to you what he delt with for the first 4 months of treatment. Now he has the regimin that works well for him and so will you... Sounds like they may have pegged it, now its time to take their advise and do what the say. In the grand scheme of things, this is a bump, not a hill for you to climb. Please hang tuff my friend, your to worth it to not hang tight for awhile longer.... We love you and care a great deal for you!!

(((((((((((HUGS))))))))))

Longislander · « **Reply #20 on:** January 22, 2007, 10:20:29 pm »

Alex, I don't know much about meds or PNP at all. I'm hoping this change of meds is the answer for you. Hang tough buddy. We're thinking about you here~

Paul

Andy Velez · « **Reply #21 on:** January 22, 2007, 10:45:10 pm »

Alex, this is a very tough time. No question about it. So feeling like you'd like to give up and die or whatever else comes to mind makes perfect sense.

It's good to know that while this is going on you have a good and dedicated medical team. The answers and solutions aren't coming as quickly as you and we would like, but I know from experience it's amazing how quickly bad stuff can turn around. Hopefully changing the meds will do it. As Tennessee Williams wrote, "sometimes there is God so quickly."

Do you have stuff to distract yourself with like music or books on cassette to listen to? Or whatever would help you to get through. During a tough time like this it can feel like it's forever, but it won't be. Really.

You know we're pulling for you and yes, things are going to get better. I know it.

Big cheers,

Robert · « **Reply #22 on:** January 22, 2007, 11:48:38 pm »

Alex, my friend, like Eric said, this is just a bump in the road. We'll help you get around it.

PNP is nothing but one little irritating motherfxxker. I've got it. Ever since my PCP and starting meds it's managed to tag along. I've got numbness in my feet; it's like they're asleep. It's not easy but all you can do is ignore it. I walk about 3 miles/day. I cut wood. I garden. I go on with my life and just ignore it as best as I can. My Dr always asks about it, like she thinks it's going to go away or something. But it never does. It's just another reminder of the virus.

The important thing is to not let it take control.

take care, mi amigo...robert

ndrew · « **Reply #23 on:** January 22, 2007, 11:50:15 pm »

Hey Alex, I'm sorry. Don't go anywhere, we love you! Keep us up-to-date with your treatment and feelings. We r here 4 u!

Drew

Blixer · « **Reply #24 on:** January 23, 2007, 12:43:10 am »

Hey Alex,
Sorry I didn't pick up on this thread earlier. But I had some very similar effects after starting my meds this past April. I didn't have the joint pain, but I had the muscle pain that got progressively worse day by day. It baffled the doctors for a while, although myalgia is listed as an unusual possible side effect of some of the meds. I did LOTS of reading during those days when I wasn't getting much sleep and found several references to joint pain and muscle pain caused by the meds. In some cases, it cleared up on its own. In other cases, it required a change of meds. You are further into your treatment than I was but I had to stop meds after 17 days. The pain reduced after stopping meds, but it took almost 6 more weeks for the pain to totally resolve. I was taking Ibuprofen about 4 times a day and I was rubbing my legs with vicks and wrapping them with elastic bandages at night just to be able to get a little rest. I tried heating pads and lots of other things too. I was at the point where I was ready to say if I have to live like this I don't want to go on. The good news is that after temporarlily stopping meds the pain eases significantly. I was able to go back on meds 25 days later and it has been smooth sailing since then. In my case, I started on Sustiva and Epzicom. My ID doctor dropped the abacavir in the epzicom and put me back on sustiva, epiriv and videx EC. My counts have been great and the only time I have significant aching now is when I exercise too much. I'm back to working two jobs and having no social life... of course, I had no social life when I was rubbing my legs with vicks and wrapping them in elastic bandages either.

But hold on and give the docs some time to work on this. And don't be afraid to just tell them you have to have a break. When I went back on meds I thought the pain was coming back and I called my doc. He gave me permission to stop the meds anytime it became too much to bear and said we would let everything clear from my system and then come up with a new plan. Just having that permission helped me make it through those next few days and get to the point where my issues finally resolved. Just remember that sustiva stays in your system a long time and if you do need to stop you need to go off the sustiva first. Otherwise you end up with effective monotreatment for a while.

There is hope!!! Just hold on!!!

allopathicholistic · « **Reply #25 on:** January 23, 2007, 10:55:08 am »

Quote from: Andy Velez on January 22, 2007, 10:45:10 pm

I know from experience it's amazing how quickly bad stuff can turn around. Hopefully changing the meds will do it. As Tennessee Williams wrote, "sometimes there is God so quickly."

Hi Alex - As Andy said - Your team of healthcare providers will help you manage. Oh yeah - and the forums members here who have PN can help you manage too. Yes "Sometimes there is God so quickly"

Thanks Andy and "Blanche Dubois"

Please let us know about your appointment with the specialist. In love & vitality, Alex

skeebo1969 · « **Reply #26 on:** January 23, 2007, 10:59:08 am »

Alex,

Hang in there my friend. As the others have said let the doctors work their magic and I am hoping you find relief soon.

Thomas

LatinAlexander · « **Reply #27 on:** January 23, 2007, 03:45:38 pm »

Well, well, well.. Came back from neurologist, and another meeting with my ID. Long story short: It seems AZT is generating mythocondrial toxicity, and they will run labs tomorrow to find out. If so, then I should change Combivir, and my next regimen would be DDi+3tc+Efavirenz...

However, I am reluctant to give up on this combo... It's just that it is sooo cool... Only 3 pills. No food planning.

I told my doctor I would not give up. That I would give it a try and find out if this could improve. He gave me Zaldiar to use with Ketoprofen and see if pain is reduced.

ID suggested to stop all medicines, and start from scratch.. But i am so greedy on my cd4... I am afraid of losing them, and all the adjustment process...

So I decided to go on on Combivir+Efavirenz+Some pain relievers... And see what the results bring... The ID said he did not agree with me (he was really looking forward to replace azt), but that he did respect and understood my position...

I have a lot of work to do.. And working helps me to focus on something else...

I hate HIV...

Alex

newt · « **Reply #28 on:** January 23, 2007, 04:58:59 pm »

Hello hello, soz to hear about the pain in the everything

I agree with your doc about getting off the AZT.

1. The pain relievers will not deal with the underlying problem, which is AZT damaging your nerves and muscle fibres.

2. The AZT damage can fuck up your heart.

3. It can get to a point where, even if you stop, the damage is irreversible

You can take efavirenz, ddI and 3TC all in on go on an empty stomach, it's not a super hard combo, it would be 3 or 4 pills 1 x day. Is there any chance of something like Epzicom (abacavir + 3TC) or Truvada (tenofovir + FTC) (which would make your combo 2 pillls

?

- matt

LatinAlexander · « **Reply #29 on:** January 24, 2007, 09:54:00 am »

Hi Matt:

Well, Nor Epzicom nor truvada (and Not Atripla) are available here. (Certain Gilead prods are not available in my country). So I would have to stick to this.

newt, where Could I read further about this kind of effect? Do you think I'd be better with ddi or with Abacavir?

THANK YOU ALL FOR YOUR TIME READING MY PROBLEMS!!!

Alex

newt · « **Reply #30 on:** January 24, 2007, 12:01:42 pm »

Provided you're not alergic, abacavir has less short and long term side effects.

Some links:

Mitochondrial Toxicity of Nucleoside Analogs simple primer in HIV Medicine

Stavudine, didanosine and AZT pose diabetes risk in D:A:D study Aidsmap

Nucleoside analogue-related mitochondrial toxicity and link to lipoatrophy: effect of non-thymidine analogues abacavir and tenofovir HIV Treatment Bulletin

Tenofovir/FTC maintains greater virological response and reduced lipoatrophy compared to AZT/3TC after 96 weeks HIV Treatment Bulletin

Direct link found between early sign of cardiovascular disease risk and AZT, possibly other NRTIs Aidsmap

Robert · « **Reply #31 on:** January 24, 2007, 12:55:38 pm »

HI Alex...

I'm sorry to hear about the neuropathy. I've got it too and I've just learned to live with it. Some days it's not so bad and I don't feel it. Actually, it's in the morning when I wake up. Getting out of bed is SO HARD.

My Dr gives me Nortriptyline (pamelor/aventyl) for it. One every night before bed. IT doesn't do anything. I take it just to please her and I figure it doesn't hurt.

I understand your willing to stand the pain for a little gain with the t-cells. But if you can get off that AZT you should. Newt's right.

Good luck.
robert

Christine · « **Reply #32 on:** January 24, 2007, 06:42:39 pm »

Hi Alex,
I had mitochondrial toxicity also a few years ago. I can't remember which meds I was on at the time, but they were switched, and the pain went away pretty fast.

Most of my pain was in my thighs. Nothing really relieved it other than stopping the meds.

You might want to reconsider, and listen to your doctors. My understanding of it, is that it can become pretty serious.

Sending good thoughts your way,
Christine

skeebo1969 · « **Reply #33 on:** January 24, 2007, 10:23:23 pm »

Alex,

You have been given some really good advice here and it seems to echo what your doctor is saying. I know it is a difficult decision for you, but judging from what everyone is saying your choice not to seems to be a bad one. I hope you change your mind.

Thomas

LatinAlexander · « **Reply #34 on:** January 27, 2007, 10:21:58 am »

Hi all:

First, THANK YOU for reading allllllllllllllllllllllllllllllllllllllll my stuff... Just wanted to give you an update...

I got some blood tests performed 2 days ago, and I got my results yesterday... My Neurologist and my ID were waiting specially for the CPK .. Guess what? It came fine (120 range)...

I called my ID doctor yesterday... He seems to be dissappointed. I am reading, and trying to document myself... Coudl this be fatigue?... I am clueless here.... (Besides the fact that my legs and arms muscles hurt)...

Let's see what could happen

Alex

heartforyou · « **Reply #35 on:** January 27, 2007, 01:33:32 pm »

Hang in there Alex...

Hermie

LatinAlexander · « **Reply #36 on:** February 08, 2007, 11:56:13 pm »

HI all:

Just wanted to give you an update:

After a struggle of more than 1 month (Including endless tests, a bunch of non-working analgesics) , my ID and I decided on giving up AZT. We are gong to stop the medicines, trying to "protect" Efavirenz. So, strating right away, I said good-byt to Efavirenz, and will keep on taking Combivir for 8 more days. From that moment on, I'll spend 2 weeks with out HAART and then, I will begin again with Efavirenz , 3TC and ddi.

Bad side : 4 pills now, gotta take them on an empty stomach
Good side : Only once a day regime.

Any advice from you guys and gals is more than welcome.

THANK YOU ALL!!!

Alex

heartforyou · « **Reply #37 on:** February 09, 2007, 06:18:05 am »

Alex,

Drink, drink drink...water of course.
That has helped me tremendously.

Know that you are not alone in your fight. We all have to change regimens sometimes and that automatically causes some extra stress.
I hope this one will work fine.

I had at least 15 changes in the course of the years, so don't worry...

Hugs and love
Hermie

blondbeauty · « **Reply #38 on:** February 09, 2007, 07:10:13 am »

I am sorry to hear about all your suffering these days. I think your Dr. ir right in stopping AZT. When you come to live to Madrid, let me take you to my Dr. or to "Carlos III Hospital" wich is the Hospital more specialized in HIV with Dr. Soriano. I think a simple switch to truvada would make a great difference. Give me a call when you are here. You have got my number. I don´t know why didn´t you get registered in the National Health System when you were here, even if you really like your ID Dr. It would have made appointments much faster and having a second choice is always good.

aztecan · « **Reply #39 on:** February 09, 2007, 09:13:19 am »

Alex,

It sounds like you and your doc have a good plan. Hey, once a day isn't bad at all.

I read about your CPK issue. I am glad it was normal. I have had high CPKs and it can be physically distressing (mine were 962.)

You are proactive and have a good relationship with your doctor. That is half the battle, so you're already ahead.

HUGS,

Mark

LatinAlexander · « **Reply #40 on:** February 10, 2007, 11:42:51 am »

Thanks for your support guys... These days haven't been easy at all...

Alex

heartforyou · « **Reply #41 on:** February 10, 2007, 05:49:47 pm »

My pleasure and our pleasure Alex.

that is the main reason for being here : support and sharing our love.

Keep strong

Hermie

Blixer · « **Reply #42 on:** February 10, 2007, 06:53:29 pm »

Alex,

I went through something similiar when I started Sustiva and Epzicom. I had to stop after 17 days. There was nothing that would help the leg pain I had. Luckily the pain started subsiding almost immediately and was totally gone within a month. I was off meds for about 20 days and then started back on the same combo you are going to be on. It has been pretty smooth sailing for me since then. I actually take all of mine at 6 AM every morning. The sustiva doesn't bother me that much and I can wait an hour and then eat my breakfast. The ddI has to be and empty stomach thing or it affects the absorption. I had problems doing them in the evening because they recommend waiting 2 hours after eating to take the ddI.

I know it has been rough on you, but I can tell you that looking back I have almost forgotten about the struggle I had. It fades with time and you move forward and life does get back to normal.

Best of luck!

allopathicholistic · « **Reply #43 on:** February 12, 2007, 10:26:48 pm »

Quote from: LatinAlexander on February 10, 2007, 11:42:51 am

Thanks for your support guys... These days haven't been easy at all...

Alex

Adversity makes us tougher hunny. Goodbye AZT, hello improvements!

{hug}
Alex

Forums Index

Welcome

Author Topic: UPDATE (4) : Goodbye AZT.. Hello ddi - Myalgia (or PnP or Reiter's Syndrome) (Read 12761 times)