I've just been Dx with Fibro to go with my Lupus. Lucky me! Sorry the new meds are really messing with me. I was given Neurontin at first, but it caused a huge weight gain. My Rheumatologist switched it to Tizanidine. Now I am sleeping all the time and am angry at everything! Does anyone know about these drugs and side-affects? I am so depressed and confused.
I'm so sorry I have both but my rheumatologist is only treating the lupus and not even the pain of it.
Hi Shely,
I am on a similar one( Lyrica) and I gained 20 pounds in the first month...and had some side affects. However, I cut back to a third of what I was prescribed (with my doctor's OK). The weight is coming off and the side affects are nil. I was so dizzy, all I could do was sit in my chair and look straight ahead...and I did not sleep. I was tempted to get off of it completely when "Flygirl" suggested that I try cutting back. That is why I love this site. And it is definitely helping with the nerve pain. I sure hope you can get some relief soon.
I have never taken either of those meds. I am currently injecting myself with Methotexrate, Prednisone & B-12,.Weightgain, jo sleep, mad, grumpy, confused, tired , tired of being tired etc.
I have 3 hrs to try sleeping b4 getting up for work.
All SLE, Fibro, Rynards, etc meds suck.
I know SPE messing with our functioning organs, so we are screwed in one way.
Hello Shely,
Sorry i can't help you regarding your meds as i've never taken them plus don't have fibro either but either way with those meds it's like your on a losing battle.
Why does'nt your rheumo just treat you for Lupus with medication as Lupus and fibro besides Lyme disease they're all identical with symptoms, the only thing different where lupus is cncerned rheumo's like to see positive bloods before treating it mainly.
You could always ask about this when you next see your rheumo.
Hugs Terri xxx
Hi Shelybeane,
I have been on Neurontin for years...before bed and Tizanidine before bed...works like a jem...that is the only way I sleep. However I would not take them in the day time, you would sleep all the time, but for Fibro those are the best meds...did your Dr. put you on a anti-depressant? Dealing with Lupus alone depresses anyone...lol
Weight gain I really didnt have any at that time when I took it at night....now that I am getting to reach the age of 60 and have slowed down due to the strokes I have had due to Lupus. I lost weight ...beat all....though I am still chubby...lol
I wish the best for you and give you a big hug .....its hard right at first ...I know...
Bernice
Hello Bernice,
Sorry about your strokes due to Lupus...i had two chronic ones myself at 24, then a TIA when i joined LWL and like you say the limitations they do is terrible besides all these issues as added bonus's.
Hugs Terri xxx
Unfortunately it is extremely common to have Fibromyalgia along with Lupus. I am more surprised when someone says they do not have it. I believe in many cases it may just not have been diagnosed, but it is there and has been all along. Personally, I refused the low-dose tricyclic antidepressant route. GABA gives me horrendous nightmares, and I have been a sleepwalker my entire life. I am also trying to lose weight, not gain it. All of that makes me a very poor candidate, and I was disappointed that it was even suggested to me. I'd rather manage it by natural means and tough out the rest.
Hello Tala,
Be surprised as i don't have it :)I
Instead i have the rare condition of A1 diseases overlapping autoimmune diseases and that's enough on the list to do any ones head in alone.
It's always something rare, eh? I have a couple of things in that category as well. :-/
Thank you for all the information. I am on Prozac for the depression (it's not helping) I was prescribed Cymbalta to help with the pain, but Medicaid won't cover the Rx. I have the arthritic symptoms of Lupus. I now have stenosis of my cervical spine and lumbar spine. The pain, as you all know, is unbearable. I hate being narcotized 24/7. I would love some info on natural or homeopathic remedies. I would give anything to be off the pain pills.
Thanks in advance,
Shelly
I also have Lupus and Fibromyalgia. The only medication that seems to help with the pain is Cymbalta. I have been on numerous medications that either didn't work or had to stop due to stomach ulcers. I had a very hard time adjusting to the Cymbalta in the beginning and now take at night to reduce many of the side effects. It has caused weight gain, which is a whole other issue
:(
Thanks for starting this discussion, I was diagnosed with Fibro the day before my foot surgery.... My Rheumie said he'd wait until after my surgery and my next apt before he changes anything. I'm not open to anything that causes weight gain....
Hi Shelyrbeane,
I don't have a full Lupus dx, I do have fibro and other autoimmune diseases. I have taken Neurontin for a short time, had a rare side effect, went to Lyrica. I tolerate it much better, but it makes you hold fluid and gain weight too. When the swelling gets too much, I have to go off it for a day or two, and do nothing but run to the bathroom. I have told both Drs that I do this, so they know. Anyway, it's almost like taking a fluid pill. But I have some major Sciatica, so going off it is not an option.
The Tizanidine, I don't recall ever taking. http://en.wikipedia.org/wiki/Tizanidine This will tell you about the side effects of this one and here is Neurontin http://en.wikipedia.org/wiki/Gabapentin
I take 225 mg of Lyrica, my Rheumatologist wanted me to cut back to 75 mg only at night, well, I was out of my mind with the Sciatica. So I'm back on the 225 mg, every 8 hours.
I do know that with the neurontin and Lyrica you have to start with small doses and gradually increase. I hope that you can work with your Dr and get to a happy place with meds, it's trial and error and involves alot of tweeking to get it right.
I also belong to BF fibromyalgia group, and invite you to join there as well. It's also a great group and there are several there with Lupus and Fibro.
Wishing you well,
SK
I also have spinal stenosis of the tailbone, the Rheum said the Psoriatic Arthritis caused it. Did they ever tell you what caused yours? Are you on a biologic?
I have moved a discussion entitled 'help for low income americans', it was composed by fellow member, Sheila Wall, and it has almost unlimited help with meds and so many other things. Hopefully there is something there that can make a difference in your life!
Hello Shelly,
I was on prozac years back for my manic depression...christ i was well drugged on them and in the end pulled off them, they're one terrible drug and if your on them now and feeling no affect mention this as you should be pulled off them and tried with another drug.
Yes alot of we understand the pain your going through regarding your spine but with myself all i'm allowed is paracetamol daily in large amounts.
Please see your GP or specialist and ask for more help on this issue.
Hugs Terri xxx
Shelyrbeane said:
Thank you for all the information. I am on Prozac for the depression (it's not helping) I was prescribed Cymbalta to help with the pain, but Medicaid won't cover the Rx. I have the arthritic symptoms of Lupus. I now have stenosis of my cervical spine and lumbar spine. The pain, as you all know, is unbearable. I hate being narcotized 24/7. I would love some info on natural or homeopathic remedies. I would give anything to be off the pain pills.
Thanks in advance,
Shelly
I don't know what a biologic is, so I assume I am not on one. My psych took me off the Prozac and I am finally on the Cymbalta. Of course the last few days have been awful... tapering off Prozac to go on the Cymbalta. I know it is a cliche, but I'm sick and tired of being sick and tired. LOL
SK said:
Hi Shelyrbeane,
I don't have a full Lupus dx, I do have fibro and other autoimmune diseases. I have taken Neurontin for a short time, had a rare side effect, went to Lyrica. I tolerate it much better, but it makes you hold fluid and gain weight too. When the swelling gets too much, I have to go off it for a day or two, and do nothing but run to the bathroom. I have told both Drs that I do this, so they know. Anyway, it's almost like taking a fluid pill. But I have some major Sciatica, so going off it is not an option.
The Tizanidine, I don't recall ever taking. http://en.wikipedia.org/wiki/Tizanidine This will tell you about the side effects of this one and here is Neurontin http://en.wikipedia.org/wiki/Gabapentin
I take 225 mg of Lyrica, my Rheumatologist wanted me to cut back to 75 mg only at night, well, I was out of my mind with the Sciatica. So I'm back on the 225 mg, every 8 hours.
I do know that with the neurontin and Lyrica you have to start with small doses and gradually increase. I hope that you can work with your Dr and get to a happy place with meds, it's trial and error and involves alot of tweeking to get it right.
I also belong to BF fibromyalgia group, and invite you to join there as well. It's also a great group and there are several there with Lupus and Fibro.
Wishing you well,
SK
I also have spinal stenosis of the tailbone, the Rheum said the Psoriatic Arthritis caused it. Did they ever tell you what caused yours? Are you on a biologic?
There's a good explanation of what a biologic is in the Wikipedia: http://en.wikipedia.org/wiki/Biologic_medical_product
Hi Shelly,
I am pleased your off the prozac and try your hardest to keep strong...life can be s hard on s many people at times it's unbelieveable but don't let Lupus or fibro rule your life as it's not worth it.
Terri xxx
Shelyrbeane,
I have been on both of those meds (at different times) but had reactions to both. The nuerontin was prescribed after my back injury by a nuerosurgeon as one of the tx for pain management. It's intent was to confuse my brain into not knowing it was in pain...didn't work. On top of that when I went off of it, I had a grandmal siezure, so I do my best not to use medicines like that for thier unintended purpose. Now, Tizanadine is a muscle relaxer otherwise known as Zanaflex. It is pretty common as it lasts longer than Soma and under State law shorter lasting muscle relaxers can only be prescribed for certain lengths of time. That said, it is a powerful medication, I don't know what mg you are taking, but for a start anything over 1-2 would very probably put you to sleep (I take 4 4mg day) but that is due to nerve damage from my back injury. It also can make you VERY thirsty, so while you are tired you are waking to drink. There are other longer acting muscle relaxers, but it seems to me that these are 2 entirely different medications and shouldn't be interchanged with each other. If you are not seeing a pain specialist, I do recommend it. These docs are trained in knowing how meds intereact with your other meds as well as making sure you are not getting too much Tylenol or nsaids that can do organ damage.
I don't know the protocol for ceasing Zanaflex, but I do know the pills are scored and I often take less, which I was told was okay from my pain mgt doc. I would get confirmation from your doc, but you may just be on too high of a dose. I am only on 4 mgs after 10 years.
Best of luck
XOXO,
DeAnne