Hi Everyone,
I’ve recently stopped my shots (enrbel and humira) due to side effects. I’m purely on supplements and acupuncture and watch my diet. Hs anyone experience the natural supplements? Has it worked? It’s been six months and I’ve seen some progress. It’s really hard to stay positive everyday. Please give me some tips. I’m new to this site and I’m really excited to connect with
you all.
Thanks
Betty
Hi Betty,
Sorry to hear you had side effects that made you come off your meds. I hope the supplemets work for you. I tried everything till I ran out of cash and hope. Acupuncture helped, but it only gave relief for a few hours. I have a TENS machine that I use a lot when it is bad. Some mornings I put it on in the car along with a wheat bag for the drive to work. I tried the diet. IT didn't seem to make a difference to me but for some people it does. Now I am trialing the meds and not eating any sugar, alcohol or caffine. It has maybe helped a bit, but I did it because of the way fructose affects the metabolism, not for PsA. I take a fish and evening primrose oil combo. Doesn't seem to do anything but my Dr insists that I should, so I do. Good luck. Let me know if anything works. Shelly
Hi Betty!
Are you seeing a healthcare provider to help you with supplements or are you doing it on your own? It's advisable to be careful mixing supplements and not going over the top with certain ones. One thing that might be helpful is getting testing done if you haven't already. Getting your iron, vitamin D, vitamin B6 and B12, and thyroid (TSH, TotalT3, Free T3, T4, T3RU and Tg), so you know where you stand with those can give huge insight into needed supplementation. Testing for celiac / gluten intolerance as well as issues with nightshades and dairy can help you figure out if diet modification might work for you. Eating as healthy as possible (whole foods - not processed, no trans fats, hydrogenated oils, high fructose corn syrup, or monosodium glutamate ... organic when possible) can have a huge health impact as well.
Hi Betty
I am scheduled to start Enbrel injections. What side effects do you think Enbrel causes?
Hi Yvonne,
I used to be on Enbrel. It stopped working for me after 6 months. But while it worked, I also had ZERO side effects from it. So maybe you'll get lucky too. :-) Warm regards, Rebecca
Yvonne said:
Hi Betty
I am scheduled to start Enbrel injections. What side effects do you think Enbrel causes?
hI AGAIN what were the pros for you when you on Enbrel? I am praying for pain relief! I am in so much pain lately that I can't get out of bed except to use the restroom. I don't want to depend on pain meds either.
Hi Yvonne,
At the time I was on Enbrel, I was using it to control the severe psoriasis. I didn't know I had developed PsA until my Enbrel and Humira wore off and my Stelara hadn't gotten going yet. In that window I discovered I had the arthritis. Which means it came on sometime during the time I was on Enbrel or Humira and they obviously did a good job keeping the symptoms at bay. So the pros were that my skin was clear and my arthritis didn't hurt. I had no side effects. The con is that it stopped working after 6 months. I've been on Stelara now for almost two years and it's not wearing off. It takes care of my skin AND my PsA. Hugs, Rebecca
Yvonne said:
hI AGAIN what were the pros for you when you on Enbrel? I am praying for pain relief! I am in so much pain lately that I can't get out of bed except to use the restroom. I don't want to depend on pain meds either.
One of the little secrets BTW with Enbrel is that you can increase the dosing schedule to 2X weekly and justify it with most insurance companies if the psoraisis isn't under control (generally getting the script from a dermatologist or physicians note of consult is enough) but have them write the script for either Q 3 or Q 4 days. You get it a little more consistently that way.
Depending on your country, BTW a 20% -50% improvement is considered effective.
Never a side effect for me either, although I far refer pre-loaded syringes over the pens. Don't believe 90% of what you read on boards about side effects. Very few people ever post on boards about what is GOOD with their meds (really they don't need much support if everything is working - right?) so we never hear from them. The other thing is get a picture of your self laying in bed trying to decide if you have to go bad enough to actually get out of bed or if the volume is low enough that if you don'tthe bed will dry quickly. Once that is imprinted in your brain, most of the side effects go away.
I don't mean to be insensitive but when I hear someone complaining (and this is true from another board) within a day I got red spot that itched where I injected and it lasted for 3 days. The immediatly 14 people come back with Oh you poor dear have you tried.... or maybe you can pre medicate with (usually Benadryl) All Ican think is whats wrong with you? Do you really have AS or PsA? I've had mosquito bites swell up more and itch longer.....
I can relate to the itching at the injection site but I found that if I used a fabric bandaid and left it on for 2 - 3 days (stays on while showering/bathing) I never had a problem with itching at all. I, too, have had mosquito bits swell up more and itch longer! I'd rather not take any more meds than necessary. I, too, am still taking Humira while they are in the process of changing me to Enbrel after a PsA flare every month since December. It got so bad that I had to use ACE wraps on both ankles and both wrists/thumbs for support. Each flare brought me back to another prednisone burst. I've been on Humira for the last 2 years w/o any problems other than a few flares now & then but since December it's been unbearable so I'm hoping that the Enbrel with be my answer. I hope it works for you, too, Yvonne!
tntlamb said:
One of the little secrets BTW with Enbrel is that you can increase the dosing schedule to 2X weekly and justify it with most insurance companies if the psoraisis isn't under control (generally getting the script from a dermatologist or physicians note of consult is enough) but have them write the script for either Q 3 or Q 4 days. You get it a little more consistently that way.
Depending on your country, BTW a 20% -50% improvement is considered effective.
Never a side effect for me either, although I far refer pre-loaded syringes over the pens. Don't believe 90% of what you read on boards about side effects. Very few people ever post on boards about what is GOOD with their meds (really they don't need much support if everything is working - right?) so we never hear from them. The other thing is get a picture of your self laying in bed trying to decide if you have to go bad enough to actually get out of bed or if the volume is low enough that if you don'tthe bed will dry quickly. Once that is imprinted in your brain, most of the side effects go away.
I don't mean to be insensitive but when I hear someone complaining (and this is true from another board) within a day I got red spot that itched where I injected and it lasted for 3 days. The immediatly 14 people come back with Oh you poor dear have you tried.... or maybe you can pre medicate with (usually Benadryl) All Ican think is whats wrong with you? Do you really have AS or PsA? I've had mosquito bites swell up more and itch longer.....
Seriously Yvone, there are fewer side effects with the Biologics than the DMRDS or NSAIDS. The biggest problem is it takes a week to know what effect a NSAID is havinging a month for a DMRD and 3 mos for a Biologic. In the meantime you have to something else to get the new meds on board. That can be frustrating. Normally if the docs see a 20% improvement in symptoms it assumed they are on the right track.
What side effects come from the Biologics are usually pretty mild (compared to what they are treating) (After all would you sooner be in bed deciding if to go the can is worth it or know you can but will be a little uncomfortable) They are very rare (less than 5%) that require going off the drug. Yeah they quit working sometimes and require switching.
But remember this one. Pain meds do too. The longer you are on them the more it takes. Along the way you start to develop hypersensitivity to point where even rubbing your back against something causes excruciating pain. (There is a fancy name for it but I can't recall it now.) If you want to avoid drugs THOSE are the ones.
All of it is better than laying in bed
Hi, Yvonne. I'm sorry that things seem so rough right now and I'm so sorry that you are having so much pain. I understand that you don't want to depend on pain meds - but if they help you function and feel better, they are a tool to help you keep going. Our culture has a lot of mixed-up ideas about pain meds, so that sometimes people who have an absolutely legitimate need to use pain meds feel guilty about taking them. I volunteer in a hospice program, and it amazes me that even with all the education about appropriate use of pain medication, that people who are only likely to live a few more weeks and their families are concerned about their becoming "addicted" to pain medication. When used as they are supposed to be used, pain medications allow us to live fuller lives and enjoy ourselves, instead of struggling through uncomfortable days and nights. I'm not suggesting that you audition for a part in "Reefer Madness," but just that you don't feel guilty about easing the real pain that you feel.
I'm sending good thoughts your way and hoping that you will soon be out of bed and doing things that you want to do.
Yvonne said:
hI AGAIN what were the pros for you when you on Enbrel? I am praying for pain relief! I am in so much pain lately that I can't get out of bed except to use the restroom. I don't want to depend on pain meds either.
Thankyou for that response Gardener. So many people think that pain meds are bad when they are sometimes the best course of action you need to take. I too have heard the same stories from family and freinds. Oh be careful you might get addicted. Then I really freak themout and tell the dosage I was taking before I had my knees replaced. They really have no idea of what pain is. Now I take pain meds as I see fit. I get a script (for 30 caps 2weeks worth) and they last me about 6-8months. I can start and stop these at will for some reason and they work for me as lots of pain meds do not. We as patients need to keep our doctors up to date on pain control and if they are not on board for that fire them and find one that is more in tune with pain from disease.
Yvonne, I do not rely on pain meds. I use them judiciously. This disease PsA unfortunatly causes pain and lots of it for some of us . With luck and proper medication pain gets under control. Please do not suffer because you are worried about depending on pain meds. Pain meds were invented to help you live your life until you can find the right combo of athritis medications that control your disease. You will not become addicted . You are treating your disease.
I am on Humira , MTX, naproxen hi BP meds, a sleeping pill and vitamins. I take 3mg of hydormorphcontin occaisonally as needed. I also at the moment am taking round the clock tylenol to try an keep the pain I am in under control. I am not condoning drug use. I am trying to be realistic. If I do not take these meds. I am in bed in agony an unable to enjoy life. GAhhhh I sound like I am speechifying here but I really do advocate pain meds for those who need them. good luck I hope the enbrel starts working for you soon.
The reason they work is because you use them the way you do 2tree. I have a script for both the pain meds and muscle relaxants in the drawer too. Somehow you seem to develop a sixth sense as to when to use either and when not too. pain is different but pain none the less. What I have learned is that 20 years ago when I used both of them daily because I had pain I had a lot more pain. When I finally got enrolled at the pain management clinic (Its a multidisciplinary clinic) One of the first things the docs did was take it away It was a long time (probably only weeks) as they taught me How to use all the tools at my disposal, and started giving me back the opieds. I got a lot more control. Despite my cavalier attitude, I am not pain free. I go from walking to wheel chair depending on the flair. But each phase, each change in pain is different and requires a different approach. But nobody should EVER put up with more than they need to because they won't use meds because society tells them it "wrong" Society is wrong.
2trees said:
Thankyou for that response Gardener. So many people think that pain meds are bad when they are sometimes the best course of action you need to take. I too have heard the same stories from family and freinds. Oh be careful you might get addicted. Then I really freak themout and tell the dosage I was taking before I had my knees replaced. They really have no idea of what pain is. Now I take pain meds as I see fit. I get a script (for 30 caps 2weeks worth) and they last me about 6-8months. I can start and stop these at will for some reason and they work for me as lots of pain meds do not. We as patients need to keep our doctors up to date on pain control and if they are not on board for that fire them and find one that is more in tune with pain from disease.
Yvonne, I do not rely on pain meds. I use them judiciously. This disease PsA unfortunatly causes pain and lots of it for some of us . With luck and proper medication pain gets under control. Please do not suffer because you are worried about depending on pain meds. Pain meds were invented to help you live your life until you can find the right combo of athritis medications that control your disease. You will not become addicted . You are treating your disease.
I am on Humira , MTX, naproxen hi BP meds, a sleeping pill and vitamins. I take 3mg of hydormorphcontin occaisonally as needed. I also at the moment am taking round the clock tylenol to try an keep the pain I am in under control. I am not condoning drug use. I am trying to be realistic. If I do not take these meds. I am in bed in agony an unable to enjoy life. GAhhhh I sound like I am speechifying here but I really do advocate pain meds for those who need them. good luck I hope the enbrel starts working for you soon.
A very helpful tip that one of my doctors gave me was to take Tylenol at the same time as I take a narcotic pain medication, as they will not interfere with each other, but the Tylenol will "potentiate" the narcotic - make the narcotic work more effectively. Because I have trouble getting through the night without waking up in pain, I take a pain pill before I go to sleep and a dose of Tylenol at the same time. That's made a big difference in my getting uninterrupted sleep, which, of course, helps my mood and decreases my pain levels.
I'm pretty careful about taking Tylenol, because it can be hard on the liver, and a lot of us take other drugs that put some stress on our livers. So I take less than the recommeded daily maximum, and my liver has always looked good on my bloodwork.
Somehow American culture has a hard time distinguishing between drugs that are for helpful, beneficial medical use and drugs that are misused to avoid dealing with challenging realities. And as people who live with a difficult, chronic, painful disease, we are sometimes caught in between those two paradigms. There is a tendency in America to believe that "pain builds character" and that "we shouldn't be dependent on things to help us, but stand on our own two feet and face what life brings us." But as people with a chronic disease, we don't really have any particular wisdom or coping skills that came with our diagnoses, even though people sometimes want to attach those characteristics to us. There were many things that I admired about Elizabeth Edwards - I thought that she was a sensitive and caring mother - but I didn't need to hear constantly about how well she dealt with the challenges that life handed her. Was I supposed to feel less adequate, less strong than she was, because I had times of despair and complaint? Or were those times important to my mental health because they let me acknowledge that at times I did feel helpless and did need to ask for support? I hope that none of us falls into the trap of trying to be super-human and tough it out through things that we don't have to suffer through.
2trees, I think you put it perfectly: "I do not rely on pain meds. I use them judiciously. This disease PSA unfortunately causes pain and lots of it for some of us. With luck and proper medication pain gets under contrl. Please d not suffer because you are worried about depending on pain meds. Pain meds were invented to help you live your life until you can find the right combo of arthritis medications that control your disease. You will not become addicted. You are treating your disease." You absolutely should not be in bed in agony unable to enjoy life!
I think that the only times a person needs to worry about their pain meds is if they notice that they are regularly increasing their dose, and not in response to more pain, but more from a need to escape from the rest of the unhappiness that goes along with PsA. If your pain IS getting worse, you need to talk with your doctor about why - because that can be an important diagnostic clue - and what is the best way to deal with increased pain.