I have read and researched here and don’t like what I read. Some of my symptoms now include severe burning sensation in muscles. Last night I couldn’t sleep because of the muscle that runs around the front of the calf. It was twitching and felt like it was on fire. Unfortunately, the 5 mg of oxy condone I Have doesn’t do much for this burning sensation, neither does Nuerontin. I had to resort to ice packs and they did little.
I already take 75 mg of Lyrica twice a day, but not for chronic pain, it is for mood stability. I have not been able to tolerate a higher dose of lyrica.
I don’t like taking more than 5 mg of oxy every 6 hours, so I don’t want to up that. Does anyone have any suggestions for meds or other solutions for the burning sensations I am starting to have?
I take Otezal, but my doc is not happy with the results and is telling me to think about biologics, but since I had prostate cancer two years ago, I am holding off on that option.
Right now I am missing 1 or 2 days of work a week, but I can’t afford to go on disability. I can take the oxy during the day to take the edge off, but the pain never goes away as you know. The PsA has been in my knees for the last three weeks and I am having a very hard time walking and sitting for long periods of time.
I am trying to find a solution to the pain and burning before I move to a biologic. From what I have read here, it seems the biologics are hit or miss anyway, or don’t work for a long period and something else has to be tried.
My neurologist said that too often people are given doses of neurontin that are way too low for neuropathy. He put me on 600mg 3x/day. That’s the low end.
Hi tamac…I had neuropathy in my feet and something part way up my legs…I wouldn’t call that neuropathy, but it was like my leg skin was being squeezed and twisted.
Anyway, I took Nortriptyline (sp) 10-20mg daily for awhile–probably a year–and that cured the problem.
Coldpacks might help somewhat, too.
Research has shown that Lidocaine pain patches work for burning pain in the feet, I never tried it, because it used to be so expensive.
I can’t take any amount of Neurontin, mess up my head to much.
I had a skin punch biopsy and was borderline posivite for small fiber neuropathy, which is purely sensory. It is creeping up my legs to my knees, seems like Remicade makes it worse. I go next week for a check up on my Waldenstrom’s Macroglobulimia, that is supposed to also cause neuropathy in later stages, I hope the Remicade is not making it accelerate.
I have to watch the Neurontin too because of the anti-depressants I take. I have found I can take 300 mg as needed for some burning nerve pain in my shoulder from being operated on twice and it will help, but I can’t take the 600 a day every day.
I am trying out some cream that works on my shoulder to see it works on my feet. I will post the results.
The patches are good, but they are expensive without a script. The ones I got years ago were much better than the ones they prescribe now.
Hi tamac…my quote button isn’t working right, but I wanted to reply to your comment about biologics being hit or miss…
Yes, I guess you could say that–some people have no results with them at all. But, some have really good results. After what happened to me–I was the biggest doubter there could be and avoided most all meds for pain or other symptoms. But, when it finally came down to getting on a biologic or shooting myself because I couldn’t live like I was much longer, I took everybody’s advice and started treating my PsA with Enbrel. That little “shot” made such a difference–it was day and night for me. Now that I’m suffering from terrible foot pain and some other things I won’t get into, thank God I took the Enbrel when I did–really should have started it several years earlier–I probably wouldn’t be as bad off as I am now.
The meds you are taking probably aren’t stopping PsA from damaging your body–once the damage is there it can’t be undone.
I have PSA now in my neck and shoulders. I’ve had flair ups in my hand and wrist. You just want to cut your wrist off! I changed my life style. Eat plenty of greens, take turmeric twice a day, meditate,and use cannibis oil too reduce swelling and pain. You must tune in to yourself!
I think you pounced on something important here Grandma_J.
tamac there’s such as thing as the internet effect as I’m sure you’re aware. It’s a distorting influence. Much as we might try to avoid it, it’s impossible to do so altogether. The effect is very noticeable in any discussion about medication because people who are happy with their treatment do not tend to pound away at the keyboard anything like as much as those who are having issues / failures / disasters. Even if all us members here responded to a survey about biologics, I’m sure there would still be an unrepresentative number who do not feel that biologics have served them well so far because people whose treatment is going very smoothly are less likely join this forum in the first place.
Had my 6 month check up with my Hematologist about my slow blood cancer, I was surprised that he recommended topical cannabis oil for my neuropathy pain. He has a lot of his cancer patients use different versions to help with the side effects from Chemo.
Now I just need to figure out where I can get some to try.
hi have you tried Amitriptyline for burning pain. i was given it for nerve pain in my local pain clinic. 75mg at night. helped for a long time but like most things you end up having to up the dose. It’s a tricyclic antidepressant so may get similar results as oil which i haven’t tried for over 40yrs! good luck
have you tried Capsiacin patches? there was an article praising them in arthritisdigest magazine in 2016. it was either issue 1 or 2. I should think information would be available online. the study had something to do with people on antidepressants as i recall. may be worth a look. it is awkward when your lists of meds reads like war & peace i know. never sure what reaction you are going to get.
Thats not necessarily true. Many take low doses of the tricyclics in the evening in addition to their regular antidepressant. The mechanism is much different than SSRI. Its worth asking about.
I’ve found gabapentin 600mg 4x a day, with tizanidine 4mg 4x a day helps the burning pain. Of course there are days when nothing helps, but that combo can help some. Blessings!
Tas
my neurologist has me on 60mg of cymbalta, and 900mg of gabapentin. When i am on my feet for a long time I still get the burning. but i would say it has revealed 70% or more of my daily burning pain.
Hi all, I happen to live in a state in which cannabis is legal. It has helped with pain tremendously. You don’t have to smoke it, it comes in edibles, body creams, coffee, just about anything you can think of. You can also use the non psychogenic CBD oil if you prefer. If it is available to you, my vote is for trying it.
There are some Chinese medicine plasters that help a lot with my SI joint pain but also helped me a few times with burning pain in my neck/upper back (unrelated to PsA): 701 Medicated Plasters by Genuine Solstice.
I have battled chronic depression for almost 30 years. I have taken most of the tricyclics and they failed for the depression. I also had some noteworthy side effects from them, mostly severe dry mouth. I have run the course of SSRI’s and SSNRI’s. My psy doc is a psychopharmacalogist and he has worked with me for 20 years to find a blend of meds that work along with my vagus nerve stimulator. I won’t say that AD’s don’t help pain, but he has told me that he doubted they would be of much help to me because I have taken most of them over the years.
My pain level is not something I can’t deal with at this time, it just takes a lot out of me everyday. I have mentioned before that my advocation is certified hypnotist. I have also had additional training in treating chronic pain with hypnosis. If it wasn’t for that, I would be on disability. My pain comes and goes and each time it comes back, it seems to be a little worse.
My rheumy is not happy with where I am. He is now suggesting I consider biologics. After having prostate cancer two years ago I am quite fearful of taking that step. I know what the current research says about biologics, but I have not convinced myself that they would not cause cancer, and that is the important issue.
My doc is more concerned with my quality of life and me not being in pain. He keeps in low dose Oxy (only 5mg) which I only take when it gets bad to just take the edge off. I really don’t like pain pills and don’t want to go up on the dose, and he knows that. He is just presenting me with the options.
I probably know way too much about medications. I’m not saying anything bad about drugs like cymbalta, but I consider them shotgun drugs. When you read about them and the first thing it says is that they don’t fully understand how they work, I have a problem with them. I am well studied in the area of depression meds and how they work.
The one thing I have controlling with my well power is the burning. That is very hard to control due to the nature of the nerves that produce that type of pain. I have not found that pain pills help it at all.
It has taken me 20 years to find a solution to my depression and I don’t want to add anything else to the mix unless that is the only choice.
@tamac I sure can’t disagree with your don’t fix what ain’t broke theory and i understand your reluctance about biologics so I won’t insult you with Data that reassure you that aggresive treatment of the PsA is in your best interest, BUT as some one who understands the brain-Body connection I will remind you of two pretty specific numbers: There is a 70% correlation between depression and autoimmune disease which leads one to believe the cause of depression is the disease. One other interesting piece of Data is psoriasis patients diagnosed with depression were 37% more likely to also develop PsA. The conclusion is Treating depression and other mental health conditions (either with medication, talk therapy or a combination of both) may help improve physical symptoms or reduce the risk of future problems,. Likewise, treating physical illnesses and getting symptoms under control can help improve mental health.
The other thing and I would certainly ask your psychopharmacalogist about is cortisol levels. Studies conclude late last year FINALLY confirmed the link between inflammation and cortisol levels as well as a link between cortisol levels and depression.
Now I admit I don’t understand hypnosis BUT there have been a number of studies that have shown voluntary breathing therapy significantly lowers cortisol levels. I do know that successful hypnosis in some measure involves breathing control. Perhaps that has been the key to your success??
In any event it may be worth investigating your cortisol levels… And now following that “set up” LOL. there is a well known pharmacological method of lowering cortisol which is lowering TNF-a-antibodies. Guess what biologics do?
So here is my advice (prolly worth what you paid for it) Have a good visit with your oncologist/urologist about your Prostate cancer and any biopsies they did. Put your mind at ease as to what the cancer was. Its rare that there is any connection between prostate cancer and the lymphoma associated with biologics. Keep in mind uncontrolled inflammatory arthritis increases your chance of several types of cancer 2 - 4 times as you factor all the info.
I’m going to start having my PCP that I see every 6 months check my cortisol and ESR.
Getting some one to relax in order to hypnotize them does require that I get them to breathe and relax. Deep diaphragm breathing increases the amount of oxygen in your the blood. The more oxygen you can get into your blood, the more the muscles will relax and ease pain. Correct deep breathing also increases dopamine which helps with pain. But, the best results is just getting more oxygen into the system.
I always had to instruct people on how to do the deep breathing using their diaphragm, but with about a month of work anyone can change the way the breathe. If someone practices breathing using their diaphragm instead of their chest long enough it will retrain the body to breathe that way. It took me about a month after I was taught all of this with my advanced training in hypnosis to treat chronic pain. I have successfully taught many people to do this and once they learn and change the way the breathe their pain levels will go down by just doing this.
I use other methods along with this and self-hypnosis to teach people to reduce their own pain. I use the same techniques to keep mine down. However, this all works great unless you let stress get to you, then it all falls apart until you get it back under control again.
I agree with you and I think my rheumy is concerned with the with the chronic inflammation. The last time we talked he said the same thing you do.
With all that said, I am a student of the mind. I know that your thoughts and beliefs will directly impact your immune system and what happens to your body. At this point in time, I believe the biologics will cause cancer. therefore, it is not safe for me to take them yet. If this is what I believe, it is what will happen. So right now, I am gathering data and getting professional opinions. If I can change my own mind I will be able to take them.
Reading recent studies about the factor inflammation has in other diseases is swaying my beliefs.
