Good for you! Now if I could get my wife to remember the empty stomach thing.........
Stoney,
I'm similar. I've had PsA for 31 yrs and only in the past couple of years have my labs started looking abnormal. All my dr's joke that according to my labs, I'm a health adult! (until recently). It was pretty funny as they could see and feel massive inflammation in all my joints. Yet my labwork didn't show it.
Stoney said:
Frances- It's not a bad idea to get a sleep study. That said, you pointed out the doctor said, "my labs don't support my extreme fatigue." Well my labs don't support anything. Labs don't tell the full story, and relying on labs only is not sufficient. I have never even had a sed rate that was anywhere near abnormal, yet clearly have inflammation.
Always glad to know I'm not the only one.
Hi Frances,
I'm not sure if you recall but I have definite energy issues as well. I'm not sleeping as much as you are but have spent that much time in bed more than a few times. I hope your Dr. agrees Plaquenil may help, if not something, anything!
Frances, Stoney and Marietta: looks like I'm in the same boat ... my labs have always been reasonable and my former Rheum. said I shouldn't feel as tired as I do. I'm seeing my new Dr. this week, I hope he has a better understanding of this disease. I'll be mentioning Plaquenil as well, I'm open to anything that will help at this point. I should get my thyroid checked also.
Best wishes everyone..
Thanks JW I do recall your fatigue issues and you mentioning Plaquenil which I tried to get prescribed this week with no luck. It's comforting to know that I'm not the only one with labs that don't support extreme fatigue, this gives me the confidence to push the issue for more meds to help with fatigue at my next appointment. My sister who has Lupus said this is also a problem with "Lupies" - doctors don't address the fatigue issue well because they can't "see it" and don't understand how devastating it is.
JW said:
Hi Frances,
I'm not sure if you recall but I have definite energy issues as well. I'm not sleeping as much as you are but have spent that much time in bed more than a few times. I hope your Dr. agrees Plaquenil may help, if not something, anything!
Frances, Stoney and Marietta: looks like I'm in the same boat ... my labs have always been reasonable and my former Rheum. said I shouldn't feel as tired as I do. I'm seeing my new Dr. this week, I hope he has a better understanding of this disease. I'll be mentioning Plaquenil as well, I'm open to anything that will help at this point. I should get my thyroid checked also.
Best wishes everyone..
Thanks for posting your "normal" lab results. I also have heard the same thing from several rheumys that my sed rate isn't bad - yet, I couldn't walk, literally, was bedridden for 2 weeks with painful feet before I was diagnosed.
Marietta said:
Stoney,
I'm similar. I've had PsA for 31 yrs and only in the past couple of years have my labs started looking abnormal. All my dr's joke that according to my labs, I'm a health adult! (until recently). It was pretty funny as they could see and feel massive inflammation in all my joints. Yet my labwork didn't show it.
Stoney said:Frances- It's not a bad idea to get a sleep study. That said, you pointed out the doctor said, "my labs don't support my extreme fatigue." Well my labs don't support anything. Labs don't tell the full story, and relying on labs only is not sufficient. I have never even had a sed rate that was anywhere near abnormal, yet clearly have inflammation.
Hi Frances,
Sorry to hear that you struck out with plaquenil. If you decide you want to pursue a trial of this med, I found a very informative message board. Many people with Lupus, RA , Sjorgren's and other Auto-immune conditions swear by it.
Here's the link :
I'm VERY much interested and will check out the site. I had lots of energy today. Best day in 2 months. Don't know why. Worked a whole day and even ran 2 errands after work. My sister (who has Lupus) and I are going to start keeping a journal to see if we can find a pattern for our good and bad days. Have my second Remicade infusion on Wednesday and decided I should wait to add any other meds until I so I can discern which med is helping or not helping.
Have you started the plaquenil? Are you going to start? Let me know how it goes.
thanks !
Frances
JW said:
Hi Frances,
Sorry to hear that you struck out with plaquenil. If you decide you want to pursue a trial of this med, I found a very informative message board. Many people with Lupus, RA , Sjorgren's and other Auto-immune conditions swear by it.
Here's the link :
Hi Frances,
Glad to hear you had a really good day. I hope things are still going well for you.
Sorry about the delay in my response, it's been a busy week. I saw my new Rheum on wednesday and discussed things with him. My labs are still good and my x-rays don't show much at the moment, it's my energy (or lack thereof). I asked him if we could try Plaquenil and he said "sure, it's a good medication". We discussed the risks and side effects, but I'm game.
I took my first dose on thursday (400mg), so this is day three. This medication can take weeks, even months (up to six) until the full effects are realized, but what to I have to loose? I've been waiting for something like this for over 20yrs!
He also prescribed Tecta for my stomach ... it looks like I have a stomach ulcer (or two), but I started feeling better (stomach) the first day. I've had over 20 years of nsaids, Ibuprofen, Naproxen, Arthrotec and Celebrex (current). He's also sending me for ultrasound. All in all, I'm very pleased: he's great to deal with and takes enough time to go over things, answer questions, etc. He actually treats me like a human being! All in all I'm very pleased. Concerned about the ulcer(s) but that is being treated and followed up. I have nothing but good things about my new Dr :)
Again, I hope things are good with you.
Take care,
JW
Thanks for the update. I'm glad you got a script for plaquenil. The last 2 days I've been in sleep mode again. I don't know why. I've been sleeping all day today. I'd very much appreciate updates on your results with plaquenil because I think I'm going to need it also. I see my rhuematologist on April 10th and get my 3rd Remicade infusion after my appointment.
JW said:
Hi Frances,
Glad to hear you had a really good day. I hope things are still going well for you.
Sorry about the delay in my response, it's been a busy week. I saw my new Rheum on wednesday and discussed things with him. My labs are still good and my x-rays don't show much at the moment, it's my energy (or lack thereof). I asked him if we could try Plaquenil and he said "sure, it's a good medication". We discussed the risks and side effects, but I'm game.
I took my first dose on thursday (400mg), so this is day three. This medication can take weeks, even months (up to six) until the full effects are realized, but what to I have to loose? I've been waiting for something like this for over 20yrs!
He also prescribed Tecta for my stomach ... it looks like I have a stomach ulcer (or two), but I started feeling better (stomach) the first day. I've had over 20 years of nsaids, Ibuprofen, Naproxen, Arthrotec and Celebrex (current). He's also sending me for ultrasound. All in all, I'm very pleased: he's great to deal with and takes enough time to go over things, answer questions, etc. He actually treats me like a human being! All in all I'm very pleased. Concerned about the ulcer(s) but that is being treated and followed up. I have nothing but good things about my new Dr :)
Again, I hope things are good with you.
Take care,
JW
One thing to remember with Plaquenil. . . Even though the chance of eye damage is very small, it can be permanent. You have to get your eyes checked, with a visual field test, every 6 months to screen for plaquenil toxicity.
Plaquenil was my first DMARD. It wasn't like it worked suddenly. It was over a period of time that I realized that I wasn't so tired, and my inflammation had improved.
JW, I think I already wrote this, but in case I didn't, my sister who has Lupus noticed a huge difference after taking plaquenil for 2 weeks. I hope you respond quickly as well. Sorry about your stomach, hope they can treat that quickly.
Frances said:
Thanks for the update. I'm glad you got a script for plaquenil. The last 2 days I've been in sleep mode again. I don't know why. I've been sleeping all day today. I'd very much appreciate updates on your results with plaquenil because I think I'm going to need it also. I see my rhuematologist on April 10th and get my 3rd Remicade infusion after my appointment.
JW said:Hi Frances,
Glad to hear you had a really good day. I hope things are still going well for you.
Sorry about the delay in my response, it's been a busy week. I saw my new Rheum on wednesday and discussed things with him. My labs are still good and my x-rays don't show much at the moment, it's my energy (or lack thereof). I asked him if we could try Plaquenil and he said "sure, it's a good medication". We discussed the risks and side effects, but I'm game.
I took my first dose on thursday (400mg), so this is day three. This medication can take weeks, even months (up to six) until the full effects are realized, but what to I have to loose? I've been waiting for something like this for over 20yrs!
He also prescribed Tecta for my stomach ... it looks like I have a stomach ulcer (or two), but I started feeling better (stomach) the first day. I've had over 20 years of nsaids, Ibuprofen, Naproxen, Arthrotec and Celebrex (current). He's also sending me for ultrasound. All in all, I'm very pleased: he's great to deal with and takes enough time to go over things, answer questions, etc. He actually treats me like a human being! All in all I'm very pleased. Concerned about the ulcer(s) but that is being treated and followed up. I have nothing but good things about my new Dr :)
Again, I hope things are good with you.
Take care,
JW
Hi Stoney, thanks for the eye caution.
Stoney said:
One thing to remember with Plaquenil. . . Even though the chance of eye damage is very small, it can be permanent. You have to get your eyes checked, with a visual field test, every 6 months to screen for plaquenil toxicity.
Plaquenil was my first DMARD. It wasn't like it worked suddenly. It was over a period of time that I realized that I wasn't so tired, and my inflammation had improved.
Sorry to hear you're back in sleep mode Frances; I know all too well what that's like :(. I hope it lets up soon. I'll definitely let you know how things go with plaquenil ... it's encouraging that your sister noticed a change after two weeks, but I'm told it could take months: one day at a time I guess (today is day 4).
My Dr. talked about the possible eye/retina problems Stoney, the odds are low as you said. I'm going for a baseline check - he's setting me up with an opthamologist, I'll also be checked regularly after that if things work out.
I'm a bit concerned about my stomach, but the Dr. said my new med (tecta) actually can help repair ulcers. I hope that's the case; I've only had stomach trouble for 6-8 months. He's also sending me for an ultrasound, but I'm wondering about a gastroscopy. I don't really know much about ulcers except they hurt like heck without the tecta..
I know the feeling Frances.......just returned to work this week after 3 months sick due to the flare which started back in July/August.........the pain was a factor but the worst thing has been the fatigue this time, it floored me just before Christmas. I had a fitness programme that I started when I was able, started really really slowly and gradually built up, but I couldn't even start that til I had got over the worst of the fatigue...............I just had to be patient and slept when I had to. My GP was extremely helpful and signed me off without any qualms, even persuaded me not to go back until I was seen by the work Occupational Health Consultant and cleared fit to work.
Thanks for the replies. At this point I'm completely unreliable for work. I don't know if I should try to take extended leave. The problem is I'm running out of leave and would have to submit an application for the leave donation program and/or ask for advance leave.
How’s your thyroid?
I had and still have from time to time extreme fatigue...so much my wife said no more driving. I was on Lyica, I could not wake up. So I had a sleep study. I am now on a CPAP. It has help but it has not stopped it totally. I now will go a few day then it will hit me again. But they are still tring to get my Oxygen to a normal level. I was at 46 5 of normal for over 2.5 hour on my last sleep study.
The CPAP has been a good thing. It has been rough to adjust to. But overall I would go with out it.
Hi Not Understood, I am scheduling a sleep study. Although I've been told I don't snore.
Hi Cooper, I had Graves' Disease, an autoimmune disease of the thyroid 15 years and the radiated my thyroid. I've been taking synthroid and get it my thyroid levels checked every 6 months.
Cooper s said:
How's your thyroid?