Plan A is not working. I am currently taking the following: Enbrel 50 mg weekly
Prednisone 5 mg daily
Volatren Gel as needed
Vicoden 5 mg as needed for pain
After reading several things on PsA, I changed my diet to gluten-free. I have not been diagnosed with Celiac disease, but saw no harm in attempting to improve my health with diet. Not to mention what prednisone has done to my body...was taking 40 mg as needed but began to taper after reading what it does to your body and bones. I did feel better after making the changes to my diet, but it was short lived. I am on my 4th injection of Enbrel. I know it is early in the game. However, I have ice pick headaches, my gut is torn up, I am sleeping more that I ever have, and the brain fog is just scary. I rely on over the counter energy products to maintain employment. I work 9 hours a day and have added drive time of about one hour. I have to work. I have to have insurance to pay for my care. BUT, I need help. My body is toxic. I swell each day, I hurt like crazy, my stomach roars all day and night, I spend hours in the bathroom, and I don't know how to help myself feel better.
I do have a rheumatologist who is aware of every issue I just listed. He listens and we continue with Plan A. Please offer any suggestions that can help me to get my symptoms to a managable place. Thank you for your help.
I'm sorry your body is a roaring beast right now. Give the Enbrel more time. Also, tapering down Pred. can cause a lot of horrible side effects (most of which you mentioned). It is not uncommon to flare horribly when reducing steroid treatment. Most dr's only recommend short bursts of prednisone now.
Have you discussed adding MTX or Arava to your Enbrel? Combos can sometimes do what single treatment can't.
Hang in there. Tie a knot at the end of your rope and hang on tight. And keep posting! That's what this group is for. ((((hugs))) if you would like some.
My name is Karen... my story is something similiar to yours.... my stomach has been having issues... not to the point of not working... but rumbling and spending muchhhhh more time in the bathroom.. and I am on my 4th Injection of Enbrel.. I do take vicodin.. but not predinsone or Voltaren...
I do have licodine patches for pain.. but i rarely use them... I do use biofreeze quite often.. that seens to help the trigger points
I have to do daily stretching.. of my lower back... it helps immensely... and just this week ... we were forced to d a wellness program at work.. if we wanted to save $60 per month on our insurance premiums.... I need to thank them... because now I dont have the hip pain and I sleep like a baby....
I do still have the achiness associated with Psa but not the intense, uncontrollable pain.. I used to get. so I am finally seeing some progress...
Just try to hang in .. and just keep letting your dr. know how you feel...
Thank you for the responses. I am trying to hang in there. We are also doing a wellness program at work that I have joined. I also wanted to clarify that I am working, and I love my job. I just want to feel good while I am working. Thank you for the encouragement. I needed it today.
Karen said:
Hi,
My name is Karen... my story is something similiar to yours.... my stomach has been having issues... not to the point of not working... but rumbling and spending muchhhhh more time in the bathroom.. and I am on my 4th Injection of Enbrel.. I do take vicodin.. but not predinsone or Voltaren...
I do have licodine patches for pain.. but i rarely use them... I do use biofreeze quite often.. that seens to help the trigger points
I have to do daily stretching.. of my lower back... it helps immensely... and just this week ... we were forced to d a wellness program at work.. if we wanted to save $60 per month on our insurance premiums.... I need to thank them... because now I dont have the hip pain and I sleep like a baby....
I do still have the achiness associated with Psa but not the intense, uncontrollable pain.. I used to get. so I am finally seeing some progress...
Just try to hang in .. and just keep letting your dr. know how you feel...
Yep, hang in there…cant say I can help you with a plan B as I’m still on plan A myself. Its tough when you get to the point of not knowing what to do with yourself, thinking of you x
Couple things things, young lady, (actually that doesn't sound any better than old gal does it?) as everyone has told you, it takes a while to get the Enbrel really going even with the loading dose you are taking (old doctor too?)
All the things you are describing tohough really could have come from the large amount of Predi you were taking. Did you taper on your own and does your Doc know about it??? You sound like you having withdrawal more than PsA (not doubting the PsA symptoms) problems from lon term or high level predi use can hang on a long time. Some of the folks I know say it was easier getting off dope than predi.
You may take a year or more to start producing enough natural predi to make a difference.... As you know taking it shuts down the adrenals IN EVERYBODY nearly every time (to some degree)
Voltarin is dicolfolnec, even if you are using it topically it CAN and does still cause stomach problems So does Vicoden. As you are aware the FDA wants it to joint Darvocet in la la land BECAUSE of the side effects (liver and gut.) They have already lowered the effectiveness..... I don't know about a a plan B, but you need something better than you've got OR time to make plan A work
The plan will evolve in time. I work through some serious pain at times and I don't love my job. Be thankful you have something to look forward to. I have found the treatment that is just starting to work a little better. It took over a year to put together and is still a work in progress. I am lucky to have doctors who understand that I need to work and that has sped things up. I had no idea how serious this was going to be or how long it would take to get to this point. There will be a light at the end of the tunnel. Now I am going to sleep for ten to twelve hours. Tomorrow is a new day! Looking forward to it.
Sorry your having a tough time. I was on enbrel for about 6 months. It took about 2 months of weekly injections to get the “full” effect. I’m now on MTX but I also took remicade for a couple months. Keep giving the enbrel a chance and hopefully it will work for you. You may want to talk to the dr about adding small dose of MTX, ive been told the combination of treatments can be really effective.
Ohh the headaches never went away but they did start to dull. I typically would take Tylenol prior to my injection and for the rest of the day. I did try a theracane which helped with neck tension that made the headaches worse, it seemed to help. I also found that massage and chocolate would help with some head aches. Are you having a reaction from the injection site? Amitriptyline was also beneficial and might be something to consider. It helped me sleep and has helped me with the occasional migraine.
I had a similar situation for quite a while, also similar work situation (though whilst on MTX, not Enbrel), and I’m sorry you are having such a hard time of it. Go as easy as you can on the energy drinks for the sake of your tummy - they are pretty much guaranteed to irritate your intestines if you have any sensitivity (I know, easier said than done, and unfortunately coffee has the same effect).
Have these tummy things been happening before all the meds, or only after? If they are after, then I’m going to go with Lamb that a lot of what you are talking about might be pred withdrawal (it does get better
If the tummy stuff has been going on since the illness, and before the meds (ie not side effect driven), research Humira. It (along with Remicade and Cimizia) has been shown to be more effective for spondlyarthopies with an Intestinal component. If this is the case, and your insurance covers, and your Rheumy listens, you might consider switching to one of these as plan B.
Either way, as Lamb says, lay off the NSAIDs. If you must use them, get a prescription for a Cox-2 inhibitor (eg Celebrex), as they are demonstrated to have a less irritating effect on the intestines.
When i got really desperate to have a clear head, I very occasionally used a combination cold and flu /sinus tablet before work (eg paracetamol + codeine + pseudoephedrine, or similar). Gotta be desperate though. More sleeps a better solution, if there is any way at all for you to get it.
Enbrel once a week worked for me after a while, but like all the biologics, my body gets used to it and I have to switch. You may want to try 25mg 2x a week instead of 50 once. It is how Enbrel was made to be used originally and a lot of us find that the dose wears off halfway through the week.
A lit of your symptoms are probably from the longterm use of prednisone, which is a necessary evil sometimes, but should be taken very cautiously! If you can do without it, you will start to feel less bloated, sleep better and feel a lot better! Then you can see what symptoms you actually have to deal with.
Sorry to hear PlanA isn’t working very well for you right now. I was on a similar PlanA for a decade before figuring out a new plan. And after a decade of constant pills for this, that and the other thing, I had to figure out a new solution. My guts were in rough shape from a decade of constant Cox2 usage, also I’m sensitive to both Pred and MTX, and always had side effects when taking either…
After reading the research done by a doctor in California, I tried out a daily juicing regime, which has been nothing short of miraculous for my system! It was a different approach…instead of treating they symptoms of the disease, I was working on nourishing, healing and balancing my immune system. I juice fruits and veggies (mainly veggies) every day…making roughly 1.5 quarts of juice a day, which I then consume over 3-4 “doses” throughout the day.
I’ve been on this regime almost a year and a half, and have had such healing to my system that I’m no longer on any medications (have been off all meds a year now) and my disease has basically gone into a long term sustained remission. I’m even getting my finger/toe nails back, which had been ravaged by disease, and no medications ever came close to helping to this degree.
Here’s my daily juice “tonic”…
4-6 Lg carrots
1 apple
1 beet
1-2 celery ribs
1 lemon
Knuckle of ginger
3-4 Lg Kale leaves
Handful of spinach
Handful of parsley
I also throw in other veggies in as I have them in my fridge, but the above is the base for every juice I make.
Anyhow, that’s been my PlanB for a while now, and I’ve had such success with it, I’d be remiss not to share it with others.
God bless you, Old Gal! I hope you feel better very soon. I agree with others about Prednisone... Great and horrible stuff! Also, please ask your doc if you can start Arava (or MTX, but I have no experience with that). I take both Enbrel 50 mg weekly and Arava daily and I am (mostly) in good shape. Also, Neurontin (Gabapentin) works amazing for sleep and will help with nerve pain. I have been on it for both, and now take 300 mg every night and I sleep great! The neurontin has a very low side effect profile and there's no "hangover" from it. Wishing you the best!
Anyone have any suggestions for me I would be most grateful!!! I have been to numerous Rheumatologists over several states and can't seem to get any help. My problem is that i am allergic to EVERYthing! I can't take Nsaids bc thay burned a hole in my stomach. I have had allergic reactions to Humira, Enbrel (the worse), Simponi, Remicade infusions (awful). I am giving myself Methotrexate shots once a week and they take the edge off but I take them on Thursday-am useless on Friday, Saturday better, Sunday pretty good and everything starts going downhill again by Monday. I have taken it on myself to start taking GATA which of all things my Vet told me about and my dog is on it for Arthritis. It is suppose to have amazing results. Will keep you posted. Any other helpful ideas would be greatly appreciated!!! Thanks so much!!!
You might want to try Arava instead of the MTX. It works similarly but some people (like me) have many fewer side effects on it. It is a daily pill.
It sounds like you've been getting help but the meds aren't working. Some people are non-responders, unfortunately. Before biologics there was gold. I did gold injections (Solganol). I'm not sure if it is available anymore, but I was one of the few who responded very well with no side effects (very unusual for me).
Ralafen is one NSAID that (I think) passes through the stomach and is absorbed in the small intestine instead. I took it for a few years when my stomach was a mess from other NSAIDs.
I have found that my diet plays a part in how I feel. Our bodies need as much help as they can to get this disease under contol and eating healthy helps me. If I start to feel worse I am very strict for a week about what I eat and this helps reduce my pain level and in turn move more freely. This is what I do:- No saturated or trans fats, 5 vegetables and 3 fruits using as many colours as possible. No processed or over refined food. No preserved meats and remove all the fat off meat and I limit my meat intake. Cut out sugar or limit it to 6 teaspoons a day. Substitute sugar with honey, maple syrup or agave where you can. Then I add in all the herbs and foods that have anti inflammatory properties and increase the foods which contain ant oxidants. Juicing is good to get more goodness into your body but I find that is far better to eat the whole foods which have the fibre in them. I do gentle exercise and get out into the sunshine for short periods to ensure I am getting enough vitamin D. This can't do you any harm and you may find it might help you and could be worth trying.
Thank you for all of the suggestions that were given. I wanted to clarify a few things in my post. I was given 40mg of prednisone for my flares by my former rheumatologist. I mentioned to the new dr. that I thought it best to taper myself off of it due to the horrid things I have read about it. I have been able to get down to 5mg but I have found it to be very hard. I have pains that I was not aware of before the taper. He had no opinion or reaction to my wanting to taper the prednisone. I also mentioned the gluten-free diet and that also was met with no response. I mentioned it to try to understand the effect the diet may have on the inflammation in my body.
I hope that in the weeks to come, my body calms down. I am walking around 25-30 pounds heavier than I want to be, feel like a small buffalo on most days, and have more sizes in my closet than a small store. I am very thankful I can walk even if it hurts. I can put my hands in my pockets and just pretend to be like everyone else. I work 36 hrs a week M-Thursday and get Friday off. Thank God I have the weekend to rest. There are days I can sleep for 16+ hours. It is a battle to get out of bed and do anything.
Thank you for providing this site. My friends and family mean well, but they do not understand what this is. Got to love the suggestions they give...
