Opinions please
#276761 - 08/02/06 02:33 PM
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
As many of you have been reading, I've not been feeling well lately. The internist yesterday said my hemoglobin has dropped, which means I am now anemic. The last time it was checked was in the spring and the level was 13 point something-normal is 12-15. Mine is 8.
Everything I read says anemia can be caused by lack of iron or b vitamins, ruled out in my blood work. It can be caused by chronic auto-immune disease, such as the RA I have. It can be caused by bleeding too much, ie heavy periods-I piggy back bc pills, so no periods and when I do have them they are light. I do have gastritis and some bleeding in my vomit and diarrhea. However, one of the drugs I'm on, Imuran, can also cause hemolytic anemia.
I can't think straight but it seems most of these "ill" feelings started around the same time as I started the imuran. I started on a low dose and two weeks later, they doubled it. My RA is most definitely improving but I'm so sick, I can't stand it.
All my "ill" feelings are listed for side effects of the imuran, including the anemia. Headache, tired, jaundice, bruises, diarrhea, abdominal pain, weakness, swollen lymph nodes, chills, fever, dark colored urine (I thought I was just dehydrated) blood in stool, nausea, the list goes on.
The kicker is, I complained of all this to the new rheumy last week and she said it may be the imuran but NOT to stop it. She said I could go to one pill on odd days and two pills on even days, down from 2 pills a day. Its been a week now and no improvement. The internist yesterday also said not to stop it because the Ra would flare so bad and I've already so much joint damage.
I called the rheumys office Monday and she is out of town all week, thats why I went to the internist instead. My appt with the rheumy isn't until the 29th and I had to fight with the receptionist to get that as she doesn't have any appts until mid September.
The other issue is that the internist was concerned with the change in bowel habits, from complete C to so much D and there is blood it in occasionally. So, she scheduled me an appt with a gastro guy the day before I'm supposed to see the rheumy again. She thought I might have some bleeding in my gastro tract which could also cause the anemia but I really think its the imuran.
What do I do? I think the RA pain would be better than feeling so sick. I'm afraid driving because I'm so dizzy and have actually pulled over to barf while driving several times. I'm thinking about going against the medical people and stopping the imuran, at least for a week or two to see if I feel any less sick. I don't want a colonoscopy and endoscopy to rule out gastro bleeding if its all from the imuran. I'm so confused, I can't think straight as it is. Its just EVERYTHING I read says that this drug can cause all my symptoms but they still want me to take it??? Here's one of the short ones on the imuran http://health.yahoo.com/ency/healthwise/uh1166
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
Re: P.S
#276762 - 08/02/06 02:35 PM
|
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
The reason I started the imuran was because my eyes had been flaring so bad and the steroids eye drops were wrecking my cornea's so the eye specialist called the rheumy and told them to put me on something stronger to get the RA under control or I'd lose my vision from permanent cornea damage. I've had two break through eye flare ups since starting the imuran, if I stop, that my flare as well....
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Hi Michele,
As I've told you I'm also on Imuran 150mg daily to treat ulcerative colitis. I too think that Imuran might be the problem as it doesn't always agree with everyone.
Please go back to the doctor and get them to lower your dose. Imuran isn't something that you can just stop taking cold turkey, you need to be weened off of it by your doctor.
Jenn
Print
Remind Me
Notify Moderator
|
|
|
Michele, I'm sorry you are having so much trouble lately. I understand your concern about taking the medicine. It's supposed to help you, but it sounds like the side effects are worse than what you were dealing with to begin with! Sometimes I get so angry at doctors when I air my concerns about the side effects and they just blow it off like it's nothing. They're not the ones who have to live with the problems so it's so easy for them to tell you to continue the medicine.
This is tough, I know. The decision will have to be yours. No one else can tell you what to do. Unless it's life-threatening if you don't take the medicine, then taking it is your decision. It all comes down to your QUALITY OF LIFE. Which can you deal with on a daily basis? The pain/swelling from the RA ----or the side effects from the medicine?
Will these side effects subside? Or will they continue like this? Is there any other medicine you could take for this? What would happen if you didn't take it? (I know you said you would have eye problems).
One suggestion I have is to talk to an experienced pharmacist that you can trust. I have one that has been invaluable to me. He knows more about the medicines than the doctor does! He can explain---in plain English---how the medicine works, the side effects, and whether or not they should subside. Do you have anyone like this that you could discuss this with?
I will pray that you make the right decision. I know it's hard. When I was reading your post last night, I couldn't believe it but a good friend of mine was just diagnosed yesterday with autoimmune hepitatis. The treatment is prednisone and Imuran, this same medicine you are taking. I'm afraid she has a long road ahead of her. She doesn't have a choice. Her body's immune system is attacking her liver cells, and she must get this under control or she could end up having to have a liver transplant.
I'm praying for you. Hang in there! Whatever you decide to do, we are here for you.
Print
Remind Me
Notify Moderator
|
|
|
My friend was on Imuran for a year, and this is exactly what he was going through. You're describing it to a T. What are your other options if you ditch this drug? Is there something less awful you can go on?
Sending you {{{{HUGS}}}}!!
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
I called the pharmacist last night and he couldn't find how long it will take to get out of my system but as the side effects are getting worse and not better and its been more than 3 months he said the side effects probably would not get better.
Will and I talked it over and we agreed that I would stop it for 2 weeks and see how I feel. If none of the side effects have gone away then maybe it isn't the drug after all. If they do go away, I'll try maybe just taking a lower dose and see how that goes. I'm a little angry that I have to make these decision without the help of the dr's but I just can't live like this.
So far, I've not taken two doses, last night and this morning. I'm feeling about the same. Although I did just go potty and it was more or less formed as to the usual complete D. Not sure if that is from the Imodium I took or what and we will see how it goes after I eat.
I read it can take 90 days for the red blood cells to regenerate so it will take a while for the anemia to go away so I don't expect to feel great anytime soon but lets hope for an improvement.
The only other drug is methotrexate and that takes months to work and you have to stop it 3 months before even thinking about trying to get pregnant. Its a category X for pregnancy, if it doesn't make you miscarry, it will cause birth defects.
I'm hoping the effects of the imuran on the ra will last until I can start the humira. I'm still on the placquenil and the prednisone so lets hope I don't flare too bad. If my eyes flare up, I'll talk to the ophthalmologist and see if there is an alternative to treating the eyes that doesn't involve more steroids.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Thanks bl, I did call a pharmacist last night and even he couldn't find how long it takes to get out of your system. However he said most pills take 72 hours to clear the blood stream but it will take 3 months or so before the red blood cells regenerate to make the anemia improve.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Thanks Jenn. The pharmacist didn't find anything that said it couldn't be stopped cold turkey and since I can't even speak to the rheumy until next week-I stopped it. I figured I'd give it a week or two and see how I feel. I can't live like this, hopefully the steroids and placquenil will carry me over until I can start the humira.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
You are one smart chica, and I'd completely trust you to make decisions about your health. It sucks that your doctor isn't the one being more proactive about your quality of life. It's good that you can step up (even in your weakened state!) and make this decision. I'm glad you're putting your foot down. You deserve better than this, and I hope you get some real strength back as it leaves your system.
It makes me mad what passes for medicine. I know it's supposed to help and I'm sure it saves lives for some people. But I also know the difference between medicine and poison is just a matter of dosage. Just burns me up that my friend is suffering doubly. 
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Not sure whats worse, the disease or the supposed cures!!  If your friend wants to chat, give them my email. Both steroids and Imuran are powerful and toxic drugs but some people do tolerate them better so lets hope your friend is one of the lucky ones!
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Sadly, my friend didn't make it. He died of skin cancer in March 2004.  He was really open about the disease and medicines he went through though, and I learned a great deal about all of his conditions before he left (he had a bunch going against him). I really mourn his loss but he taught me a lot about living.
~nelly~
Print
Remind Me
Notify Moderator
|
|
|
Hi Michele,
I'm glad you consulted a pharmacist. I hope that your side effects go away soon and that once the rhuemy gets back she can help you.
Jenn
Print
Remind Me
Notify Moderator
|
|
|
So sorry you are so ill, michele. I'm not familiar with the drug you are taking. So all I can offer is my sincere concern and lots of {{{hugs}}}.
I'm home right now after trying to go to work. I think I mainly had a panic attack and had to come home. Now that I've eaten a little bit to curb my tummy growling and I layed down for a little while...I'm thinking about trying to go back to work. I'm so tired of this.
Hope you are feeling better soon!
{{{hugs}}}
Print
Remind Me
Notify Moderator
|
|
|
I'm so sorry you're feeling so miserable, Michele. But ... one thing about the Imuran ... it sounds like your doctors are telling you not to stop it because they are worried about permanent damage from the RA. I know you feel completely hideous now -- but would the relief of side effects be worth the risk of ending up with irreversible damage to your joints or eyes?
On the other hand, you're still on daily steroids, so it's possible that the steroids are what's helping keep the RA in check and not the Imuran, right? I really hope that's the case and that stopping the Imuran does nothing but good.
You sound so sick I can't believe you're going to work every day. Isn't there any way you could get a couple weeks off? Can't your boss hire a temp or borrow a girl from another office? I mean, if you end up in the hospital because you're so sick and dehydrated he'd have to find someone to cover then! 
I hope you start feeling better. It's so unfair that you have to go through this.
--------------------
jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
Print
Remind Me
Notify Moderator
|
Re: {{{hugs}}}
#276898 - 08/03/06 10:21 AM
|
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
Thanks nuggs. Sorry you're having another rough day also.
I've been reading on line of otherswho reacted the same way that I am. Apparently 25% of people cannot tolerate it. I haven't thrown up at all today and only a little D so far and I just ate lunch. I still don't feel good, very, very weak and headachy, ears ringing but its an improvement.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Thats the million dollar question, which is worse, the permanent damage from the ra or being deathly ill from the treatments! 
I think the placquenil and prednisone will hopefully keep the ra to a dull roar until I can start the humira, which will hopefully stop the progression of the ra. Obviously, the imuran has changed my immune system and red blood cells because of the blood work results. I have read it takes 3 months for those changes to be reversed so I'm hoping the ra will still at bay for a little while and that the nasty side effects fade quickly.
If I start to flare bad, I'll be sure to call the rheumy but I just can't go on barfing and having D all day. The headache, the sinus pain, the weakness, the foggy brain, the just SICK feeling has got to go!! I'm not talking a little weakness, I'm talking can't lift a glass of water, haven't blown dry my hair in 2 weeks, can't carry my puppys create, cant pick up a basket of laundry-I can hardly lift my arms over myhead to put my hair in a ponytail. I'm talking 16 pounds of weight loss in 6 weeks DESPITE being on steroids. I look like walking death.
I'd love to take some time off. The other offices are each 2 hours away and none of the girls are willing to drive that far to cover me. We would need an experienced optician and the temp agency for that charges $25 an hour, thats more than I make. So even if I could afford to lose my pay check, which I can't as hubbys business is down right now-it would still cost my boss a lot more to have a temp cover. Its the one downfall of my job. The upsides are that I work good hours, m-f 10-6 and get to bring my dogs to work everyday! Not to mention its a pretty gravy job all things considered OTHER than the problem of time off! 
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Print
Remind Me
Notify Moderator
|
|
|
I think you have to go with your own feelings on this. I am not sure what to advise you on. I would say if the symptoms go away then its worth it but what about the damage to your eyes? Is there any other drug out there you could take that doesn't cause all these side effects and will still protect your eyes? I really wish I had some great earth shattering advice for you. My heart aches that you are going through all of this. Just know I am here and continue to pray for you. You should be proud that you have not just given up. Even though I know you feel like you want to. You are still making it to work and trying to focus on good things like those doggies.  Hang in there sweetie! I've got to believe it can only get better for you!! Love ya!
Print
Remind Me
Notify Moderator
|
Posts
