My SED rate is in the 120s so we are thinking the Enbrel isn't working and the Prednisone bursts and maintenance dosage don't seem to be controlling things. Also, I am borderline anemic again and heading down.
I was an Enbrel for two years and then switched to Humira, which is working much better for me. The side effects are very similar to those of Enbrel, many of which can be kept down to a dull roar - check out my post on managing side effects for tips and tricks.
One of the interesting things about Humira is what it did to my anemia. I've had RA since I was four years old and my entire life, I have been horribly anemic to the point where every time I saw new doctor, they got all alarmed. I'd always try to calm them down and tell them not to worry because this is my normal. After I'd been on Humira for about a year, my doctor ordered some blood tests and when they came back, every number was black. They were all normal. I was no longer anemic. After 40 years of really severe anemia, Humira made it go away. My doctor even said that if you only looked at my blood tests, you'd think I was a perfectly healthy woman. Will the same thing happen to you? Who knows - we react differently to different drugs, but maybe you'll have the same experience I had.
Please let us know how it goes?
Thanks for the input. I have had to have blood transfusions and go to rehab for the Anemia so it is really great to know that Humira helped you with the Anemia. Maybe this is the right thing to do then. I will not be switching until the end of March as I have a three month supply of Enbrel that I need to use up first.
What are your thoughts on both Enbrel and Humira targeting the TNF the same way versus trying one that targets a different way?
Thanks for your help and I hope the new year find's you doing better too.
Enbrel and Humira are indeed both TNF blockers, but work in slightly different ways, which means that although Enbrel didn't work very well for you, Humira might. Still, I suggest you talk to your rheumatologist about this.
Luck woman, Humira did exactly the opposite. My RBC count dropped fast and hard within a month. But it seems Simponi is working like Humira did for you. Just proves that we all react to meds differently.
Like snowflakes, no 2 are exactly the same.
Thanks for the input:-) Deana
Thank you for responding. Unfortunately that post was a year old . . . I had a bad reaction to Humira and I am now on Simponi which has improved my numbers drastically. My SED went from over 130 down to 59 and seems to be staying there. However at about the same time they switched me to a Methotrexate shot from the pills and increased my dosage. All I want to do is sleep, but apparently I am not anemic at this time??? Don't know what to make of it all. Primary is sending me to a sleep clinic to check for apnea, but I am pretty sure it is the Methotrexate. Also, we are experience drug shortages in my area of the Methotrexate and every month I am having to call all the drug stores in the area to find it.. Again thanks for thinking of me. Deana
I'm so glad to hear that Simponi is working for you! Have you considered talking to your doctor about maybe trying to decrease methotrexate to see how much of your resolve is due to Simponi? It is my impression that you have to be very careful about messing with drugs that work - if you go off them, they may not work as well again. Methotrexate is particularly persnickety - you have to taper off really, really slowly or you may risk a big flare.
Fatigue can be a result of many things. You could be right that it is related to the increasing methotrexate or perhaps the combination of increasing methotrexate and adding Simponi at the same time. Your body can take a while to settle in to new drugs, so it may get better over time. How long have you been on your current meds/dose of meds?
I'm glad to hear that your doctor is looking into a number of different things to eliminate potential causes of the fatigue. You may also want to consult a licensed naturopath for help with supplements, etc. For instance, my naturopath told me that whenever someone complains of fatigue, they will start them on B12 shots. Personally, I have had some problems with extreme fatigue since last fall and get a B12 shot every two weeks. It helps tremendously. My doctor tested my levels and according to Western/allopathic medicine, my levels are normal. However, the shots still work. You may also ask your doctor to check your vitamin D levels, as I've heard D deficiency can also make your tired.
keep us posted, please?
We think we have solved the fatigue mystery after spending a night at a sleep clinic where I found out I have severe sleep apnea. Just started using a BIPAP machine so we will see how it goes. I do supplement my Vitamin D and take a Multivitamin, but no B12. That is next I think. Right now I am having horrible back/lumbar spine issues and nothing seems to be working. Just started seeing a chiropractor after radiofrequency treaments stopped working. Man if it's not one thing it is another. Thanks for the response, Deana
so glad you found out a possible cause of your fatigue. Please let us know if it helps? If you're up for it down the road, you consider writing a SharePost about your experience? I don't think a lot of people are aware that sleep apnea can be a contributing factor to fatigue, so it would be very helpful for our community.
Good luck with your new sleeping buddy and the chiropractor!
Thanks for the kind words and experience. Something I want to let you and all know is the Chiropractor thinks my tailbone pain is related to taking Boniva. There is an FDA Alert out regarding severe muscular skeletal pain related to side effects of Boniva and other drugs given for osteoporosis. If you have new unexplained severe pain this may be a new cause. http://www.druglib.com/druginfo/boniva/alerts/
Hope this is helpful,
that's really valuable lnowledge to have! Would you be willing to write a SharePost about this when you get more information? I think our community could benefit from knowing more about this. You may also want to pop by our Osteoporosis site and talk to Pam Flores, the Community Leader there. She knows a lot about this type of issue.
I would be happy to write a share post. Can you please tell me how to write a share post.
excellent! I'm so glad to hear it.
To write a SharePost, you put your cursor over the My Home button at the top right of each page and click on My Updates. When there, you will find an area that says My Communities again on the right-hand side of the screen. Look for Rheumatoid Arthritis. Next to that, you will find two buttons, one that says Create a SharePost and another saying Ask a Question. Click on the SharePost button and you will find a field in which to write, much as when you ask or answer a question. If you want to take some time to work on your SharePost, you can write it on your computer in Word first and then cut and paste it into the SharePost field.
I look forward to reading it!
Thanks for the info. Continuation - Just found out I have TWO fractures in my pelvis that 5 doctors, 2 PTs, 1 Chiropractor, 1 Pain Clinic Doctor didn't figure out since September. So basically I have been walking around in horrible pain since September with two fractured bones. Also have been fighting for pain meds so now that I have broken bones they are willing . . . That's after I sign a drug contract:-) Bone scan of my back is scheduled for Friday to check for more fractures. We all agree now that I have osteoporosis and will be starting Reclast infusion soon. Anyone have any experience with Reclast that I should know about drop me a note. Thanks, Deana
excuse me while I bang my head against the wall... I'm so sorry that so many health professionals failed to find out what was going on. I hope you can get the pain relief you need, as well as proper treatment for your osteoporosis.
For more information about osteoporosis and various treatments, your best bet is to check out our Osteoporosis site and talk to Pam Flores. She's very knowledgeable and is a wonderfully supportive person - I'll tell her to expect you. You may also want to check out my interview with Pam about RA and osteoporosis.
You should also read Karen Lee Richards' post on treatment agreements on our Chronic Pain site to make sure you're protected before you sign. If you have any questions, Karen will be able to advise you better than I can on this particular issue.
I have ankylosing spondylitis and my rhuematologist has been treating me with Humira for approximately 4 years now. I haven't had any bad results from this medication. In fact I have felt healthier while taking the Humira than I have while taking any other medication for the arthritis. The unfortunate came knocking on my door about a week ago at a normal visit and was told that recent studies on the Humira have shown that it is not slowing the progression of the athritis like it's supposed to and in 4 months when I'm no longer breasfeeding my daughter, he is changing my medication to methotrexate. I am not enthused about going through this process and am afraid that the new therapy with the methotrexate won't benefit my health and inflamation as well as the Humira. What are the results you had while taking the methotrexate?
I went through the same drugs, except I take Arava instead of the methotrexate. I think it is a waste of your time to switch. The two drugs are too simular By the time all the paperwork went through I was in alot of pain. The humira didn't do a darn thing for me. Then it was on to Remicade. Just as it started to work I ended up with a severe allergic reaction. That was terrible because it was working! I felt better on the remicade then anything else I have tried. Now I am on Orencia. It hasn't been long enough for me to know if it will work. I just got a phone call my liver test came back high... I hope I can still continue. Sometimes it's all overwhelming! I have found swimming to be the best thing or me! Good luck :)
Thank you for the response. I am thinking the same thing that they are too similar to switch. I have an appointment in March to discuss with my rheumatologist. I am sorry to hear you had a bad reaction to Remicade. I know what you mean about it all being overwhelming. My family thinks my life is boring and depressing - they haven't a clue the work it takes. I too like to swim. I have had a really bad cold/sinus thing going on since Christmas requiring multiple doses of antibiotics, but I am hoping to get back in the pool soon. Again thanks for the input and I hope things work out for you. Deana
I loved Enbrel but it slowly stopped working for me. Humira did not work for me but i understand a lot of people love it.
The only thing I can advise you on is the actual injection itself. It has citric acid in it for some strange reason and burns. That was my biggest shock and of course was not warned about it.
Other than that? Keep an eye on your blood tests with Humira. It like a lot of other biomeds and mess with your blood tests. Your doc should check ya once a month for a little while then have follow up every 3 months for a while.
I hope it works for ya. Good luck.
This is why I am questioning it because I thought Enbrel and Humira pretty much target the same receptors.
I don't know if you know you are supposed to let the injection warm up for a half hour before you give it otherwise it hurts. I didn't know about citric acid so thank you for that info.
My doctor watches me like a hawk and I do too:-)
What are you taking now?
I have a long long list of meds. But the ones i consider to be my baseline are Arava and Simponi. I am trying to get off of prednisone again, but my rheumie doesn't think I will be able to come off of it completely after all these years.
Thanks for the info. I sure do know what you mean about trying to get off Prednisone. I have been taking it since 1998 and it is nasty as far as controlling your weight. Everytime I go up or do a burst it is immediate and brutal. Also watch your bone density if you have been on Prednisone a long time as it causes osteoporosis. I now have to take Boniva for that too.
yeppers, I have recently been dx'd with Osteoporosis, myself.
Are you taking anything? If you can get Boniva as you only have to take it once a month and with all the pills we take it is better not to add a bunch more. A lot of doctors will not prescribe it as it is about $300/month for one pill. The Pharmaceuticals aren't making any money on that one hey!
not taking anything for it right now. New Rheumy was shocked that no one has given me anything as of yet. So he took complete panel of blood tests including updated RA Factor to determine which med to put me on. He said something about a IV med once a month since I am already being treated for an ulcer. Who knows.
Boniva is for osteoporosis. It helps rebuild your bones and keeps them from getting worse. I have fractured my elbow and ankle in the last few years before Boniva so it is important to take something just for the osteoporosis.
I take a generic Prilosec every morning with my meds as it coats your stomach for 24 hrs. and so far my stomach is okay most of the time.
Have you ever tried remicade? I think that they say if you fail enbrel but did good then to try remicade since it targets the same thing but my questions was if it targets the same thing then way is remicade not working? Would be interested in what biologics you have tired.
I have tried Enbrel, Humira and now Simponi. My rheumy says the next step would be the IV meds. Simponi seems to be keeping things are bay but my RA Factor keeps rising. So I am at a loss actually.
I have also been through Plaquenil and MTX (both tablets and injections).
From what I understand most of the biologics target pretty much the same thing in order to suppress the immune system. But they are all different compounds.
I personally wish they would find an injection to make it all go away.
My doctor said something about an IV once a month for osteoporosis, too. She said it only takes three to five minutes, if I remember correctly. She said my stomach could not tolerate taking the pills.
That was a couple of years agow when I was just a hair shy of the osteoporosis diagnosis. I believe they called it osteopenia. I haven't had another scan since, since I have been avoiding my yearly exams for pap smears, etc. That is the doc who usually orders the scan to test for osteoporosis. I guess I should make an appointment, but............
What is better, Ronie? Take another med, or bury my head in the sand? If there were a big screen TV in the hole under the sand that played good movies and my favorite football games, I could be happy for a long time. We could meet there and eat popcorn and fudge and chocolate chip cookies, and drink diet Coke and chocolate milk and have a great time. Let me know what you think!
Hugs to you, Ronnie. Hope you feel better soon!!!
No football but a couple of good movie, preferably comedies. And since we are eating everything under the sun I will overlook my bypass and sensitivity to sugar. I will just have to suck it up for a bit..So let's not forget some good old fashioned fried chicken.. LOL.
And we are in the same boat with the PAP. Haven't had one in 5 years. I know, pop my hand. shame on me. But I am really sick of docs as of recently. LOL
just on my way out the door, so I'll get to the other parts of your question later. However, I just wanted to mention that you are most definitely not supposed to let the medication warm up for half an hour. the Biologics cannot be out of the fridge for too long or they become ineffective - I think the maximum amount of time Humira or Enbrel can be unrefrigerated is 20-30 min.
The brochure that comes with Enbrel tells you to leave it out for 30 minutes before administering the shot. I have heard from others that if you don't it really burns going in. Can't speak to the other biologics only Enbrel.
I hope you are feeling better:-)
Thanks for your concern,
I am with you on them finding an injection to make it all go away:-) OR better yet a pill.
I have not used Humira, but I do know how frustrating it is to have to switch meds, I have taken Enbrel and methotrexate for about 8 years, and it has always worked but lately it feels also like i tisn't and having other issues the tendons and all and my dr wants me to switch to remicade, which is an iv, is Humira a shot? I am would rather not do iv's he has not mentioned Humira, only orenica or remicade.
I know what you mean about IV as it opens up a whole new set of possible side effects. Yes, Humira is a shot just like Enbrel.
Here is the thing - I think Orencia and Remicade may target different receptors or work differently and that might be why your doctor is thinking of changing you. As far as I understand Enbrel and Humira target the same way which is why I am not sure it makes sense to switch from one to the other. You can Google Orencia, Remicade, Enbrel, and Humira and read how they work. Also there is a magazine called "Arthritis Today" that is excellent as far as comparing drugs and giving up-to-date info on arthritis.
Hope this helps,
Hi Deana, I have not used Enbrel, but I have used Humira. Like others stated, changing meds can be frustrating, I am currently going through the same thing. So hang in there and continue to work with your Rheumatologist.
I fortunately did not have any side effects from Humira, it does slightly burn, but only during the injection process. Good Luck