This is likely a Sid effect from methotrexate. Are you taking enough folic acid?
I am not taking methotrexate--no meds like that yet--so it's not a side effect of meds unless it is a late effect from celebrex. I know cacner sores are common with methotrexate but do we get them even without that med?
Was a typo--canker sores is what I meant. Sorry about that--I am wearing a brace on my right hand and it has been going numb too--so I guess I am lucky just to be able to type at all. So far I have corrected this short statement 5 times. It is still uncontrolled and I am waiting to see the rheumatologist on the 22nd. My PCP did give me amitriptyline and that helps a lot with sleep. I am taking 1000mg tylenol every 6 hours around the clock and also taking Celebrex 200 mg twice a day. The pain will wake me up every night when the meds are due! No need to set an alarm! I still find myself crying in pain and life is beginning to circle around that. It's all so very depressing.
Wow!sounds like you are having a REALLY tough run at the moment *gentle hugs* I just wanted to give you a word of warning about the Tryptanol (Amyltryptyline) I found that I needed to keep increasing the dose to get the same effect... then ended up being unable to pee and had to spend three days in hospital with a catheter while they filled me up with fluids to flush the Tryptanol out of my system... not my finest hour... I'm using a combination of ketorolac (Torodol)and Mersyndol at night which tamps down the pain long enough to get to sleep.. When I'm not on the internet, that is.. you might find that he grandma remedy of carb soda and warm water helps your mouth ulcers... doesn't taste too wonderful, but it does help
cheers
Moxie said:
Was a typo--canker sores is what I meant. Sorry about that--I am wearing a brace on my right hand and it has been going numb too--so I guess I am lucky just to be able to type at all. So far I have corrected this short statement 5 times. It is still uncontrolled and I am waiting to see the rheumatologist on the 22nd. My PCP did give me amitriptyline and that helps a lot with sleep. I am taking 1000mg tylenol every 6 hours around the clock and also taking Celebrex 200 mg twice a day. The pain will wake me up every night when the meds are due! No need to set an alarm! I still find myself crying in pain and life is beginning to circle around that. It's all so very depressing.
Can this really be controlled? Can it really get any better? That hope is what keeps me going right now. It appears the canker sores are from the celebrex but no way can I do without that. So far the amitriptyline has been a true blessing and I am very grateful for all the help from everyone on this site. You have all been a blessing too.
Have you thought about the controlled release patches?? You might need something that is continuously acting to get you off the to pain roundabout....
Moxie, yes, absolutely, this disease can be controlled. With the right combination of therapies and lifestyle adjustments, you can have good quality of life. There are many people here who have achieved that, and many many more who aren’t here because they are too busy doing other things!
The trouble is that it takes time to find the magic combination of medications and other therapies. Take heart. Things will get better for you. Eighteen months ago, people here told me that, and I found it hard to believe at the time. But they were right.
Meanwhile, lean on us. We’re here for you.
Gentle hugs all around!
I couldn't have put it any better than Seenie. Be gentle with yourself!
I totally understand you. As if the constant pain and stiffness isn’t enough - the lack of sleep makes things worse and plays with your emotions. Don’t let it steal your joy. I echo everyone else in just staying positive - things have to get better with the right medications. I’ve just tried a honey and apple cider vinegar solution to help with sleep & it really worked - google it! My mom made it for me. Could be coincidence it worked first try but like everyone else…I’m learning to enjoy each day one day at a time, one success at a time. God bless you.
Every time I get a canker sore, I wet my finger, coat it with table salt, and apply it to the sore. It burns, but it's worked every time for me and everyone I've told to do this--including our grandkids. The burning only lasts a few seconds. You should only need to do it once.
Moxie, here’s a message which should encourage you and everyone else who is doubting that it does get better:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/hello-strangers-1?commentId=6339595%3AComment%3A187863
And for every member like MAT, who checked in after being off the radar for a while, I’m guessing that there are several more who are too busy living their lives to give us a shout out. Hate to think of it, but they’ve probably forgotten all about us.
Hang in there, Moxie my friend!
Seenie said:
Moxie, yes, absolutely, this disease can be controlled. With the right combination of therapies and lifestyle adjustments, you can have good quality of life. There are many people here who have achieved that, and many many more who aren't here because they are too busy doing other things!
The trouble is that it takes time to find the magic combination of medications and other therapies. Take heart. Things will get better for you. Eighteen months ago, people here told me that, and I found it hard to believe at the time. But they were right.
Meanwhile, lean on us. We're here for you.
OMG now my liver enzymes are too high and cant take the methotrexate (sp) What next? I cant take prednisone either due to allergy. This is hopeless! Many more lab test today including hepatitis panel. Anyone have liver problems with this---like autoimmune hepatitis>?
No panic, Moxie. Lots of people here have had liver enzymes go out of whack, resulting in stopping MTX. Of course they will do a hepatitis panel, to be sure to rule that out. Livers recover from drug insult over the short term. Your doctors are just being very cautious, and that is good.
But it is just sooooo frustrating when you don’t seem to be able to make progress with this thing. On to the next trial … and so it goes. Just when you think you might be getting ahead of the game. ;-(
Chin up, my friend!
OK I need some advice again---my liver enzymes are back to normal. But, I just spend 5 days in the hospital due to Takotsubo in which there has been some heart damage. My cardiologists thinks I will be to my normal within 2 months. In the mean time, my left ventricle is enlarged and I am very short of breath with any activity. I know all this slowly improves and I will recover from this. But, with me being so weak that I can't walk 25 feet without becoming severely short of breath I am scared to start the methotrexate. I go to the cardiologist in 2 weeks for another echo and monitor progress. There is a slight chance I could have a reoccurance of the Takotsubo. But I will ask the cardiologist if I can start the methotrexate at that time.
My question is, should I go ahead and take the methotrexate starting in 2 weeks and hope for the best --does it make anyone sick? Or should I wait longer. I know he cardiologist will have little knowledge about that medication and will prob say it will be fine without much consideration. Any ideas?
Thanks
Talk to the rheumatologist about this. They have mor understanding of how MTX works, and the risk of infection. Make sure you’re cleared by the prescribing doc before resuming.
Moxie said:
OK I need some advice again—my liver enzymes are back to normal. But, I just spend 5 days in the hospital due to Takotsubo in which there has been some heart damage. My cardiologists thinks I will be to my normal within 2 months. In the mean time, my left ventricle is enlarged and I am very short of breath with any activity. I know all this slowly improves and I will recover from this. But, with me being so weak that I can’t walk 25 feet without becoming severely short of breath I am scared to start the methotrexate. I go to the cardiologist in 2 weeks for another echo and monitor progress. There is a slight chance I could have a reoccurance of the Takotsubo. But I will ask the cardiologist if I can start the methotrexate at that time.
My question is, should I go ahead and take the methotrexate starting in 2 weeks and hope for the best --does it make anyone sick? Or should I wait longer. I know he cardiologist will have little knowledge about that medication and will prob say it will be fine without much consideration. Any ideas?
Thanks
I have a few ideas. But first I'm concerened about "damage" It is rare that one does not recover fully from takotsubo if in fact that is what it is. That is where I would start.You really need to get that confirmed. That is not exactly a diagnoses you want to have follow you. Any myopathy is serious, I would assume with five days in, you had nearly ever test known to man, and they came up with nothing, which is part of why the takotsubo. but you want to be sure.
So lets assume that its correct. Whether you restart MTX or not is of little consequence although personally I would not until I was certain I was fully recovered. The biologics and the DMARDs all have warnings about worsening congestive heart failure. Cardiac myopathy is a first cousin. I just would not risk it stressing my heart to remove congestion.
Occasionally tacotsubo can be brought on by congestion, but its rare and should show up in your blood work. Hopefully I won't be struck by lightening for suggesting this may be time for steroids.
But lets not beat arounnd the bush, by now most have googled takotsubo and know that almost always it is brought on by anxiety levels so high, that your heart damn near explodes. This same anxiety also drives PsA. Gosh knows you have reasons to be anxious but until that anxiety gets undercontrol, there is darn little PsA meds can do for you. That is where you need to start. There are some excellent meds. Many of us have had great success with wellbutrin. Cognitive behavior therapy is highly succesful. You pain docs may have a recommendation. Taotsubo is also responsible for the "died from a broken heart"
Right now your job is to get your heart well get into cardiac rehab as soon as your cardiologist releases you. Then get your self ready to fight the PsA. FWIW, your cardiologist is familiar with the arthrits meds. He has specific training in the area. Cardiology is a sub specialty of internal medicine as rheumatolgy. While there are 100 some forms of arthriis and diagnoses is important. 1 out of 8 americans have one of those forms the treatment and meds overlap a lot. Nothing so rare he doesn't know what he s doing. Cardiologists generally hate meds of all kinds so they cinsider carefully what they say is okay
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My doctor has put me on trepoline at night. At the moment I feel a bit like a zombie but he said that it would take a little while to get used to it. It's also an antidepressant and the side effect is to help with sleep. I have a toddler who has major sleep disturbance issues so I haven't slept through a night in almost 3 years. I really do feel for you, Moxie because I know that when we have a particularly restless night the pain in always much worse the next day. I hope you find some relief
Tntlamb, The damage is not permanent and I do expect a full recovery it is not immediate. The left ventricle actually enlarged and yes you can die from this and yes the heart can erupt. There are a few other reasons this could occur other than emotional stress. For example a tumor of the adrenal gland with the sudden release of adrenaline. This was also noted on the CT scan I had done--and yes numerous test were done and yes the diagnosis is confirmed. The cardiologist nor the rhuematologist will tough this so again I am referred back to my PCP. Oh and I forgot to mention my younger sister died at the age of 29 from a rare form cancer of the adrenal gland. I can never have one simple thing going on and my head is swimming with all this stuff.....so mediation and shut down is at times in order. Thanks everyone
So was there and adrenal tumor? I can well imagine how your head must be swimming. They sadly use Takotsubo as junk diagnoses for heart conditions too, which is why I wanted you to be sure it was confirmed Takotsubo. Its often a polite way of saying, you really aren't sick its "all in your head" just more sophisticated. You want to make sure if there is another identifiable cause for the Takotsubo, that it is listed as "Takotsubo secondary to Pheochromocytoma" You do not want the anxiety connection to cloud some future docs judgement.
I'm quite aware of adrenal complications also causing this. Pheochromocytomas however while causing the increased levels of adrenaline etc sufficient to cause Takotsubo also cause higher levels of Cortisol which one would think would over compensate for any inflammatory stuff going on. There is often a thyroid condition driving both issues. I assume they did the routine thyroid tests but need to go a bit deeper. The MRI is a great screening tool but you really should have a MIBG scan. Hopefully your PCP is on top of this, but don't hesitate to ask for a referral to a center of excellence. I rarely suggest Cleveland Clinic for anything because I despise their cookie cutter approach to Medicine, but in this case they really do excell in this stuff. Mayo is great too..........
And while it may not seem like it Moxie, As complicated as all this is and all the issues you are facing, it could be a very simple answer is right around the corner, in fact I'd say its likley. There just is something that keeps screaming to me from the wired liver enzymes to this latest that there is a common cause. Your Takotsubo may just be the thing that turns the tide for you.
Yes, there is a mass on the left adrenal gland. I just need to follow up on it. I hope you are correct--that there is a simple answer right around the corner. Just for the record, all symptoms did point to an AMI, with elevated cardiac enzymes EKG changes with first elevated t waves then inverted t waves with prolonged QT the pain was like my chest was in a vice for 14 hours. My sister's diagnosis was too late with mets to her liver, on a good note at least this mass was found early. Now as soon as I am able to walk well enough to make it to the follow up appointments we will find out.
InIlamb, sadly, too many times doctors are too specialized and don't often connect all the dots. I really don't care if I am labled anxious as long as they follow up on their end. It's so ironic that anxiety could cause something like that considering everything I have been through in my life. I have buried my first husband at the age of 21, lost a daughter when she was 14, lost my sister a year after my daughter and I work in critical care. You would think my body was so accustomed to high stress levels that nothing could top it.