Day two of a flare :-( I saw my doctor yesterday and she believes the MTX is not working and my Rheumy will likely change me over to biologic s. I'm wondering what biologic's everyone is on and what has had the least side effects, yet have made a difference?
thanks :-)
MTX didn't work for me. But instead of going to a biologic, I got switched over to leflunomide. I've been on it since December, and have been doing well on it. My point is that biologics may or may not be the next step. I wish you luck with this. Remember though, everyone will respond differently to meds.
thanks Stoney :-) I have no idea what is ahead of me, however the Doctor mentioned biologic. It looks like this may be a long journey. I was wishing the MTX would work and had managed to stay flare free, but not the case. I also talked to my doctor about flares and she said any increased pain, so maybe this whole time I have been flaring as I had never had this much daily pain in so many joints? I've always associated a flare with intolerable pain, but maybe this is not the case. Regardless, I'm learning to live with this new pain level as I need to be able to cope. I certainly see how it can impact one emotionally because little things a pain free person can do like dressing and brushing your hair is a challenge. Thinking it's time to cut off my hair again.....My Husband is amazing and has been my rock! Thanks for your response :-) I will start researching more :-)
Stoney said:
MTX didn't work for me. But instead of going to a biologic, I got switched over to leflunomide. I've been on it since December, and have been doing well on it. My point is that biologics may or may not be the next step. I wish you luck with this. Remember though, everyone will respond differently to meds.
MTX made me too sick to take. I'm getting Remicade infusions every month and they work quite well to eliminate pain, but I'm still struggling with fatigue. Good luck !
Thank you Frances :-) I had a lot of fatigue with the MTX when I started and with each does increase. The fatigue is tough,however dealing with a 9/10 pain level the yesterday is a huge reality check. The current flare is in my left baby finger, it has been in pain for the past 3 months or longer however now it's swollen like a sausage, itchy, throbbing and painful to even just touch. I'm assuming this flare is doing some damage as it was already showing signs of a lump on the side. I guess once settles we will see. Thanks again and I will look up Remicade infusions. I'd like to learn more about these medications prior to seeing my Rheumy.
Frances said:
MTX made me too sick to take. I'm getting Remicade infusions every month and they work quite well to eliminate pain, but I'm still struggling with fatigue. Good luck !
I have been on Humiria, Simponi, Remicade and Enbrel twice, all for about a year each. Insurance may dictate which you need to start with. The Humiria burned terribly during injection but did work for me for about 6 months. Simponi never really worked well but I did not have any side effects. Enbrel worked the best on PsA and P for me. Again no side effects. I am on Remicade every 8 weeks right now. No side effects but it only works for about 4 of the 8 weeks. I build antibodies to the biologics which is why they each work about a year. Thanks to our over active immune systems! I was able to re-start Enbrel after being on Simponi for a year and get another year of some relief from the Enbrel. I take mtx with it to try and slow down my immune system and get a bit more time from the Remicade. I have gotten fatigue and some slight nausea and appetite suppression from any of the biologics which dissappears after a few doses. It is really hard for me to blame the biologics as PsA during my flares feel the same. I can get chills and lots of flu like symptoms as the inflammation is rising. The only relief I ever really get is from the biologics but they take a long time to work. I am learning patience whither I want to or not! I find flares gain in strength and frequency when I am not getting good relief from the biologic as it starts to lose potency due to my immune system. It is the sign I need to start another biologic. Sometimes it is faint but every little thing sets off another flare and I know it is time to bring it to my Rheumatologist's attention.
Remember we are all different and frequently have slightly different reactions to meds.
Michael, do you think Enbrel might work better on my fatigue rather then Remicade? My doc says he thinks Remicade and Humira are the best biologics and says none are meant to help with fatigue . . . but he said everyone's body is different so it is possible Enbrel could help with my fatigue. He's fine with me switching to Enbrel, but the Remicade is working very well for the pain. Any thoughts?
michael in vermont said:
I have been on Humiria, Simponi, Remicade and Enbrel twice, all for about a year each. Insurance may dictate which you need to start with. The Humiria burned terribly during injection but did work for me for about 6 months. Simponi never really worked well but I did not have any side effects. Enbrel worked the best on PsA and P for me. Again no side effects. I am on Remicade every 8 weeks right now. No side effects but it only works for about 4 of the 8 weeks. I build antibodies to the biologics which is why they each work about a year. Thanks to our over active immune systems! I was able to re-start Enbrel after being on Simponi for a year and get another year of some relief from the Enbrel. I take mtx with it to try and slow down my immune system and get a bit more time from the Remicade. I have gotten fatigue and some slight nausea and appetite suppression from any of the biologics which dissappears after a few doses. It is really hard for me to blame the biologics as PsA during my flares feel the same. I can get chills and lots of flu like symptoms as the inflammation is rising. The only relief I ever really get is from the biologics but they take a long time to work. I am learning patience whither I want to or not! I find flares gain in strength and frequency when I am not getting good relief from the biologic as it starts to lose potency due to my immune system. It is the sign I need to start another biologic. Sometimes it is faint but every little thing sets off another flare and I know it is time to bring it to my Rheumatologist's attention.
Remember we are all different and frequently have slightly different reactions to meds.
I was on Enbrel, which worked my PsA but not so much on my AS, which was getting worse. I had zero side effects.
I'm now on Remicade. I was going every 8 weeks, had a "Remicade hangover" for a day afterwards and then was fine. It helped, but not the full 8 weeks. My rheumy moved me to every 6 weeks, and it was better, but still not getting relief for the full six weeks. Then he upped my dose. The increase in dose caused a 2-3 day "hangover" and then around 2.5 weeks of severe nausea. That may get better as my body acclimates to the upped dosage, but I'm not sure. Remicade got me out of a wheelchair and I've even put my crutches and canes away. It's been that amazing for me. I continue to have off and on issues with my hands and shoulders, so we may tweak dosage and/or timing again.
It really is different for everyone, so necessitates picking one and seeing if it works for you.
I’m Stelara. Works well for the P, but not well with PsA. First biologic that hasn’t quit working. Just wish it worked for PsA as well as the P
Tara, if you’re going to have a biologic, it’s really a case of finding the right “fit” for you. In general, the biologics have fewer side effects than the DMARDs – they are very targeted “designer” drugs. As Stoney says, though, you may be offered another DMARD instead of a biologic. When I failed to improve after three months on MTX, sulfasalazine and hydroxychloroquine was added for four months. That didn’t improve things. So then the rheumy gave me leflunomide. After several months of that, I got a slight improvement. To make a long story short, I ultimately ended up with a biologic, but it was during that year of science experiments that my hips went from mild damage to needing replacement. In retrospect, because of my very high pain threshold, I couldn’t tell just how bad things were, the rheumy misjudged, and I now have one hip replaced and one on its last legs.
The trouble with all of these therapies – DMARDs and biologics both – is that it takes a 3-6 month trial to know for sure whether they are working. You might have to go through a few drugs before you find the right fit. That could be a lot of months, during which time who knows what damage might be occurring. Not to be alarmist, but …
Do you have the book “Psoriatic Arthritis – the Facts”, by Gladman and Chandran? (I can’t remember if I suggested it to you, it’s available on Amazon.) They advocate “early and aggressive” treatment. With your very physical job, I would be pushing for the most aggressive treatment you can get, that is to say, one of the biologics. JMHO. Which one? That’s an eeny meeny miney for you and your doc.
I am not sure Frances. I find when my PsA is being well controlled I have a lot less fatigue. But I blow through biologics about yearly. The Enbrel helped my fatigue and then it did not. Same with the Remicade I am on now. My Rheumy does not want to increase my dose nor decrease the interval but I am getting only partial relief. I suspect she is trying to keep my immune system from attacking the biologic too quickly, to see if we can get it to last longer than a year.
Remember fatigue can be due to many things. I will trow some out and you can see what sticks as you know your body and PsA better than anyone: anemia- very common in chronic disease. Have your blood drawn as recommended by your doctor. Make sure you have enough iron in your diet and enough Vitamin C to metabolize it. Make sure you get fresh air and exercise every day. Give the hemoglobin enough oxygen to carry! Sometimes my daily exercise is fairly limited but I try to make at least two exercise events per week even in my most painful times. I exercise in a heated pool, do very gentle yoga or even shopping in the mall. Anything that gets me out and moving. Make sure you are getting enough rest. That seems counter intuitive when fatigue is such an issue. We seem to sleep all the time. But I found during my worst times I was not really sleeping well. I was sort of "grey" dozing all the time but no deep "black" sleep. I started taking flexeril at bedtime with Naprosyn and Tylenol. I took a hot bath with Epsom salt and lavender. I bought a new foam mattress and some lovely linens. I had my husband install and air conditioner and use that or a fan at night. When I started getting better sleep it helped my fatigue. I saw my GP to rule out other fatigue causing disease: thyroid, diabetes, etc.
I hope this helps Frances. The fatigue and stiffness are by far the hardest things for me. I do not have as much pain as others seem to have but I have had PsA 30-50 years before I knew it so maybe I amjust past that stage. I will keep you in my thoughts and prayers.
Thanks for providing so many ideas Michael ! I really appreciate it. I just had lab work and my doctor said he was so pleased with ALL my lab work - I don't have anemia as you and he both said are common, I wish I did have anemia because it would explain the fatigue. My inflammation level is very low and I take lots of supplements: B6, B12, multi-vitamin, C, Zinc, Magnesium. I'm perplexed ! I'm going to try to exercise more. And I'm going to see an allergist, because my allergies are acting up now in Virginia and that causes fatigue - not all the fatigue that I have but it's not helping. I'm also going to ask my GP if B12 shots would help.
thanks again!
warmly,
Frances
My doc has me on Remicade every 4 weeks and that's his standard protocol for PsA patients.
nym said:
I was on Enbrel, which worked my PsA but not so much on my AS, which was getting worse. I had zero side effects.
I'm now on Remicade. I was going every 8 weeks, had a "Remicade hangover" for a day afterwards and then was fine. It helped, but not the full 8 weeks. My rheumy moved me to every 6 weeks, and it was better, but still not getting relief for the full six weeks. Then he upped my dose. The increase in dose caused a 2-3 day "hangover" and then around 2.5 weeks of severe nausea. That may get better as my body acclimates to the upped dosage, but I'm not sure. Remicade got me out of a wheelchair and I've even put my crutches and canes away. It's been that amazing for me. I continue to have off and on issues with my hands and shoulders, so we may tweak dosage and/or timing again.
It really is different for everyone, so necessitates picking one and seeing if it works for you.
The last straw for me and my doc on MTX was around my 4th dose and I was confined to bed with zero energy - I couldn't function. I'm not pushing you in the direction of biologics but do want you to know that you aren't alone feeling horrible on MTX.
TaraLynn said:
Thank you Frances :-) I had a lot of fatigue with the MTX when I started and with each does increase. The fatigue is tough,however dealing with a 9/10 pain level the yesterday is a huge reality check. The current flare is in my left baby finger, it has been in pain for the past 3 months or longer however now it's swollen like a sausage, itchy, throbbing and painful to even just touch. I'm assuming this flare is doing some damage as it was already showing signs of a lump on the side. I guess once settles we will see. Thanks again and I will look up Remicade infusions. I'd like to learn more about these medications prior to seeing my Rheumy.
Frances said:MTX made me too sick to take. I'm getting Remicade infusions every month and they work quite well to eliminate pain, but I'm still struggling with fatigue. Good luck !
Thanks Michael. I live in British Columbia Canada and have dual coverage but I'm not sure how it works with biologics. My MTX costs nothing. I picked up T3 today and was charged $4, I'm not sure how the coverage works. I asked the pharmacist today and he said it depends on my doctor and what they say I qualify for? Sounds like it can take a while to find the right one....or as you said everyone is different.
michael in vermont said:
I have been on Humiria, Simponi, Remicade and Enbrel twice, all for about a year each. Insurance may dictate which you need to start with. The Humiria burned terribly during injection but did work for me for about 6 months. Simponi never really worked well but I did not have any side effects. Enbrel worked the best on PsA and P for me. Again no side effects. I am on Remicade every 8 weeks right now. No side effects but it only works for about 4 of the 8 weeks. I build antibodies to the biologics which is why they each work about a year. Thanks to our over active immune systems! I was able to re-start Enbrel after being on Simponi for a year and get another year of some relief from the Enbrel. I take mtx with it to try and slow down my immune system and get a bit more time from the Remicade. I have gotten fatigue and some slight nausea and appetite suppression from any of the biologics which dissappears after a few doses. It is really hard for me to blame the biologics as PsA during my flares feel the same. I can get chills and lots of flu like symptoms as the inflammation is rising. The only relief I ever really get is from the biologics but they take a long time to work. I am learning patience whither I want to or not! I find flares gain in strength and frequency when I am not getting good relief from the biologic as it starts to lose potency due to my immune system. It is the sign I need to start another biologic. Sometimes it is faint but every little thing sets off another flare and I know it is time to bring it to my Rheumatologist's attention.
Remember we are all different and frequently have slightly different reactions to meds.
I'm glad I'm not the only that gets flu-like symptoms - it's happened at least twice and I knew i didn't have the flu - no fever etc. My sister who has LUPUS clued me in otherwise I wouldn't have known what was going on. I didn't have any pain.
michael in vermont said:
I have been on Humiria, Simponi, Remicade and Enbrel twice, all for about a year each. Insurance may dictate which you need to start with. The Humiria burned terribly during injection but did work for me for about 6 months. Simponi never really worked well but I did not have any side effects. Enbrel worked the best on PsA and P for me. Again no side effects. I am on Remicade every 8 weeks right now. No side effects but it only works for about 4 of the 8 weeks. I build antibodies to the biologics which is why they each work about a year. Thanks to our over active immune systems! I was able to re-start Enbrel after being on Simponi for a year and get another year of some relief from the Enbrel. I take mtx with it to try and slow down my immune system and get a bit more time from the Remicade. I have gotten fatigue and some slight nausea and appetite suppression from any of the biologics which dissappears after a few doses. It is really hard for me to blame the biologics as PsA during my flares feel the same. I can get chills and lots of flu like symptoms as the inflammation is rising. The only relief I ever really get is from the biologics but they take a long time to work. I am learning patience whither I want to or not! I find flares gain in strength and frequency when I am not getting good relief from the biologic as it starts to lose potency due to my immune system. It is the sign I need to start another biologic. Sometimes it is faint but every little thing sets off another flare and I know it is time to bring it to my Rheumatologist's attention.
Remember we are all different and frequently have slightly different reactions to meds.
Seenie, another of the moderators on here, lives in Ottawa. She may be able to give you some ideas on what gets covered in Canada and how to get it covered. She is on a biologic too.
In Canada (unlike the UK and Australia) prescription medications are not covered by the government plan. Many employers provide supplemental health care coverage for prescriptions and services like physiotherapy, massage, counselling, etc. TaraLynn works in the public sector, and she said she has dual coverage, so I’m guessing she will have a drug plan similar to mine (I’m a retired teacher). My plan covers all drugs prescribed by an MD, with no conditions. I do have a 10% co-pay, but this varies from plan to plan. The easiest thing for TaraLynn to do is to call her insurance carrier and ask. I’d be surprised if biologics were handled differently from any other prescription drug.
Good to know Seenie. Thanks.
Thanks Seenie :-) I don't have the book but will look at getting it. I tried another drug a few years back and I believe it was hydroxychloroquine, but had bad side effects so went off it. I hope to see my rheumy sooner then October, I'm calling next week to get on the cancelation list. I wasn't told to go off the MTX, so I'm assuming I stay on it until then and to be honest I'd be nervous to go off it with the current pain increase. As far as work I am having a reality check and am thinking my job is way too physical so time to move to a less strenuous job. I've done almost 14 years on the ship and it's hard on a healthy body! Right now I have to put work aside and focus on getting myself on track. The guilt I felt for having to leave work the other day was harsh and the pressure has always been on to find a quick fix and get back at it, but the quick fix isn't happening this time around and so like my doctors said I have to be patient and in time something will work.
Seenie said:
Tara, if you're going to have a biologic, it's really a case of finding the right "fit" for you. In general, the biologics have fewer side effects than the DMARDs -- they are very targeted "designer" drugs. As Stoney says, though, you may be offered another DMARD instead of a biologic. When I failed to improve after three months on MTX, sulfasalazine and hydroxychloroquine was added for four months. That didn't improve things. So then the rheumy gave me leflunomide. After several months of that, I got a slight improvement. To make a long story short, I ultimately ended up with a biologic, but it was during that year of science experiments that my hips went from mild damage to needing replacement. In retrospect, because of my very high pain threshold, I couldn't tell just how bad things were, the rheumy misjudged, and I now have one hip replaced and one on its last legs.
The trouble with all of these therapies -- DMARDs and biologics both -- is that it takes a 3-6 month trial to know for sure whether they are working. You might have to go through a few drugs before you find the right fit. That could be a lot of months, during which time who knows what damage might be occurring. Not to be alarmist, but ...
Do you have the book "Psoriatic Arthritis -- the Facts", by Gladman and Chandran? (I can't remember if I suggested it to you, it's available on Amazon.) They advocate "early and aggressive" treatment. With your very physical job, I would be pushing for the most aggressive treatment you can get, that is to say, one of the biologics. JMHO. Which one? That's an eeny meeny miney for you and your doc.