Hi all
I am just wondering if anyone else is on such a large range of medications at once. Currently I’m on Methotrexate, Sulfasalazine, plaquenil, enbrel and prednisolone.
The only med that has changed recently was moving from humira to enbrel.
I am 28 years old and wondering if I’m going to be on so many for life!
I’m not back at my rheumatologist for another 2 months so thought I’d ask here before seeing him.
I'm not aware of anyone else here being on 3 DMARDs in addition to a biologic. Which is not to say that others don't have such a combination, just that it seems unusual. And prednisolone too ..... are you having a flare at the moment or do you take it long-term? I expect this discussion will develop so you should get plenty of food for thought in preparation for your appointment.
Obviously we're not experts, just patients like yourself. But with that proviso, if I was in your shoes I'd be wanting to get the list down to one DMARD and the biologic, that would probably be my starting point anyway. What is key is the reasons your rheumy has for prescribing all these drugs. At your age .... well, especially at your age with the concerns you have, but at any age really, it's perfectly acceptable to want to know why certain drugs are prescribed and what the longer-term plan is. And also to question treatment from an informed perspective if you're not happy with it.
Wow, I've not heard of so many all at once. I guess that the DMARDS methotrexate, sulfasalazine and plaquenil were what you had to try and fail (inefficacy/side-effects) before you could access biologics?
Rheumys usually like to keep patients on a DMARD if possible, usually methotrexate, to try to guard again the possible development of anti-drug antibodies to the biologics but this list certainly seems a bit excessive although I'm sure there is a plan even if it's just a reluctance to change anything until your PsA is under control.
But to give my thoughts about being on this lot for life ... I'm not a doctor but I'd put money on the answer to this being "no".
Hope you get relief with Enbrel ... keep us posted.
I was on two DMARDs, an NSAID, and a biologic when I started the biologic. After six months I dropped the plaquenil and stayed on leflunomide. I only ever take prednisone for a flare, so it’s typically just a dose pack, although once I was on for a full month.
That does feel like overkill. I would have a talk with your doctor about why three DMARDs with the biologic, and why prednisolone.
I have been on methotrexate enbrel and gabapentin as well as oxycodone. I was on prednisone for two rounds but now I am switching from enbrel to humira. I think a lot of medications are par for the course.
I'll add in. . .. I take other medications as well, including Restasis drops, evoxac (to increase saliva), and now asthma meds. I am often on extended NSAID use as well.
While triple DMARD therapy is real, I'm not sure why to continue it once you're on a biologic.
Stoney said:
I was on two DMARDs, an NSAID, and a biologic when I started the biologic. After six months I dropped the plaquenil and stayed on leflunomide. I only ever take prednisone for a flare, so it's typically just a dose pack, although once I was on for a full month.
That does feel like overkill. I would have a talk with your doctor about why three DMARDs with the biologic, and why prednisolone.
Hi, Anika! I’m glad to see you posting, even if your question is rather perplexing. I agree with everthing that’s been said already. The drug that has me worrying for you is the prenisolone. If you are going to see you GP, I’d certainly be asking about the long term risks of that one. And while we’re talking long term effects, are your eyes being monitored in light of your taking plaquenil?
You must have pretty serious disease if you got a biologic within a year or so of being diagnosed (or have I calculated wrong?). If that’s the case, why is it going to be another two years before ou will get to see your rheumatologist again? If it is a rheumie shortage, then I’d be really leaning on my GP for monitoring and for keeping me informed of what the rheumatologist’s game plan is. Like you say, your’re young and it would be nice to know where you stand.
All of that said, people with PsA do tend to take a lot of medications and most of us have accepted that that’s going to be our story, probably for life. But as the others have said, three DMARDs seems an awful lot in addition to a biologic. But then again, we’re not doctors, much less rheumatologists. You need to ask them.
Stay well and keep in touch!
Hi Anika, I just wanted to chime in with the others about all the meds. Yuck, I'd certainly have a good discussion with your rheumy about which ones could be discontinued. I know the prednisolone isn't good for you long term--well, unless in very small doses, which supposedly doesn't work. The only med I took (and only a couple of dose packs) was prednisone when I just couldn't take the PsA symptoms anymore. But when I begged my rheumy and internist for another prednisone taper, they both flatly refused, telling me it was bad for me. They had been trying to convince me to take Sulfasalazine, then MTX, both which I refused, but finally I had to cave and go on Enbrel. For me, it was like I was a quitter--like I failed and gave up the fight against my psoriasis and mostly my PsA. I was toughing it out and didn't want to be dependent upon a med--especially something so "big" as a biologic. So far my approach has worked for me. Not saying it would work for others. I take very few pain meds even though I have pain every day from damaged feet and OA in several joints. The Enbrel has been working really well on my PsA and psoriasis for almost 22 months now. I'm crossing my fingers and praying it keeps working, but never sure what the future holds.
Good luck in figuring out which of the meds you can do away with and what one(s) you need. My motto is less is better, but that's just me, I hate pills.
Thanks so much for this discussion. I, too, am on a boatload of medications. After reading this, I really really need to go over each and every one with my rheumy. I'll be seeing him next week; hopefully, I can discontinue one or two or three...
Ah Anika....taking handfuls of meds is just So.Much.Fun, right? I wanted to chime in with my experience also. Again, as others have mentioned, I am not a doctor, so I can only tell you about my experiences. As for everyone's advice to ask your doctor - definitely! I will often write a list of questions to ask my doctor before going to see him, as I tend to get a little overwhelmed and end up forgetting to ask most of them if they aren't written down. If your doctor doesn't respond to your questions in a way that helps you understand, push for a different/better answer from him/her. My favorite method is..."Oh, thanks so much for answering that, but could you translate your answer into English now for me?" (with a big grin). I'm a little luckier than most, as my dad is a Neurophysiologist and taught in the medical school at Ohio State University for 30 years so if I don't completely understand something, I call him and make HIM translate it for me.
Anway....I am currently taking Sulfasalazine twice a day, 17.5 mg of MTX every Saturday, 80 mg of Prednisone every Saturday, a blood pressure pill, 1000mg of Metformin twice a day (diabetes), cyclobenzaprine up to every 6 hours for muscle spasms, an NSAID twice a day, an allergy pill twice a day, folic acid, Gabepentin twice a day (nerve pain), and a bunch of others that I can't remember right at the moment. My point here, is that I have taken MTX, Sultasalazine, a biologic and prednisone all at the same time, but I would certainly ask your doctor if he intended for you to continue taking both the plaquenil and mtx at the same time. I guess my main question to you would be...is it all working for you? If it is, if you feel that your psoriasis and PsA are in good control with all those meds, I'm not sure if I would want to go off of anything. Every person, every body is different. If you've found a cocktail that works for you - great! If you don't feel that it is in good control, then a change is definitely in order.
Also...make sure he/she is monitoring your bloodwork at least every 6 months to check your liver function. Mine does a CBC and a CMP at least that often, and sometimes throws in other blood tests as well just to see what is going on in my body. The ESR is a test that we've given up worrying about, as it supposedly indicates the level of inflammation that is in your body, but always comes up normal for me - even though there is clearly a great deal of inflammation in various joints always.
So anyway, this is my two cents worth. Please let us know what is happening after your next appointment. Inquiring minds and all....
I also take a blood pressure med, and I do feel it is necessary--at about 50 my BPs started reading around 190/100. I went on a BP med that just never seemed to really work. So my internist said she wanted to add another med (Amlodipine) telling me the Amlodipine together with the first med would work better to bring my BP down. I refused to add and told her it didn't make sense to me to keep taking a med that didn't work. Oh, she gave me the usual argument doctors seem to do--that two will work better than one. I stood firm and dropped the first med. I've since been on the 5 mg Amlodipine for about 5 years now and it works--alone--like a charm! I'm not certain, but I just think doctors aren't hesitant to put a person on as many meds as possible (that's just my opinion) and a couple people in my life are ruining their health taking all the meds their doctors are throwing at them. My husband is morbidly obese, has had a couple of grand mal seizures recently, has serious liver and kidney damage, is now being studied for diabetes, and I feel like we can mostly point the finger at all the meds he's taken since his late 20s. His doctors "piled up" the meds--a few for BP, a couple for cholesterol, a few for lungs, several for pain, some gout meds (including Plaquenil and prednisolone) and now a seizure med.
There are many natural ways to relieve pain. I never understood how ice packs could work, but they do! Heating pads work very well, too! When my back hurts I sometimes take an ice pack and my heating pad to work. I've even stuffed the ice pack into my waistband if I had to spend time standing or walking. I'm not sure if ice packs or heat can stop PsA damage, but it does take down swelling/inflammation.
If I was 28, I'd be especially cautious with meds. My husband is in very bad shape from a lifetime of them. It sucks when our liver and kidneys start failing and now there aren't many options for him. He's finally realizing that eating healthy, exercising and using the ice packs and heating pad for some of his pain are very effective and helping him feel a lot better.
I apologize if I sound opinionated. I just wanted to express my point of view for what it's worth. I'm definitely not an advocate of going "all natural", but have to admit I gave all the natural remedies a try before I went on Enbrel. If the natural approach works, go for it! Listen to your instincts--your body will tell you what works and what doesn't! And, hopefully, you will find the information here as food for thought that will help you make decisions about how to treat your own PsA.
Grandma J, there are lots of things I love about this passionate response of yours. It so brings out some of the dangers of being an overly accepting or passive patient.
I'm not with you on the natural approach though, not 100%. I totally agree that there are ways of dealing with pain other than drugs which we'd all do well to consider and explore. Though my heart goes out to those in severe pain from PsA who find that exercise or mindfulness or distraction etc. just don't cut it and therefore need prescription painkillers. And there may be 'natural' or complementary ways of coping with certain diseases that are indeed good alternatives to prescription drugs.
However, the trouble with listening to our instincts or our bodies when we have PsA is that it is a degenerative and destructive disease and the fact that damage is occurring may not be obvious until it is relatively advanced. Relief of symptoms is not the same as slowing the progression of the disease. The way I see it that's the main PsA conundrum.
Grandma J said:
I also take a blood pressure med, and I do feel it is necessary--at about 50 my BPs started reading around 190/100. I went on a BP med that just never seemed to really work. So my internist said she wanted to add another med (Amlodipine) telling me the Amlodipine together with the first med would work better to bring my BP down. I refused to add and told her it didn't make sense to me to keep taking a med that didn't work. Oh, she gave me the usual argument doctors seem to do--that two will work better than one. I stood firm and dropped the first med. I've since been on the 5 mg Amlodipine for about 5 years now and it works--alone--like a charm! I'm not certain, but I just think doctors aren't hesitant to put a person on as many meds as possible (that's just my opinion) and a couple people in my life are ruining their health taking all the meds their doctors are throwing at them. My husband is morbidly obese, has had a couple of grand mal seizures recently, has serious liver and kidney damage, is now being studied for diabetes, and I feel like we can mostly point the finger at all the meds he's taken since his late 20s. His doctors "piled up" the meds--a few for BP, a couple for cholesterol, a few for lungs, several for pain, some gout meds (including Plaquenil and prednisolone) and now a seizure med.
There are many natural ways to relieve pain. I never understood how ice packs could work, but they do! Heating pads work very well, too! When my back hurts I sometimes take an ice pack and my heating pad to work. I've even stuffed the ice pack into my waistband if I had to spend time standing or walking. I'm not sure if ice packs or heat can stop PsA damage, but it does take down swelling/inflammation.
If I was 28, I'd be especially cautious with meds. My husband is in very bad shape from a lifetime of them. It sucks when our liver and kidneys start failing and now there aren't many options for him. He's finally realizing that eating healthy, exercising and using the ice packs and heating pad for some of his pain are very effective and helping him feel a lot better.
I apologize if I sound opinionated. I just wanted to express my point of view for what it's worth. I'm definitely not an advocate of going "all natural", but have to admit I gave all the natural remedies a try before I went on Enbrel. If the natural approach works, go for it! Listen to your instincts--your body will tell you what works and what doesn't! And, hopefully, you will find the information here as food for thought that will help you make decisions about how to treat your own PsA.
I think my wording was a little off, Sybil! I should have been more specific about what meds are potentially harmful. We all know prednisone is one of them, as are many pain meds--especially when they're overused.
The biologics are very safe and can all but stop the disease in its tracks for a lot of people and at least reduce symptoms for many others. DMARDS, although I haven't used them, seem to also be able to attack the disease.
I meant specifically pain meds, which help relieve pain but don't stop disease progression. Those, I think, (Nsaids, Tylenol, etc.--Sulfasalazine) should be used with caution and as sparingly as tolerable. That's why I suggested ice and heat, because they are good, safe pain relievers that won't harm vital organs. ☺
Sybil said:
Grandma J, there are lots of things I love about this passionate response of yours. It so brings out some of the dangers of being an overly accepting or passive patient.
I'm not with you on the natural approach though, not 100%. I totally agree that there are ways of dealing with pain other than drugs which we'd all do well to consider and explore. Though my heart goes out to those in severe pain from PsA who find that exercise or mindfulness or distraction etc. just don't cut it and therefore need prescription painkillers. And there may be 'natural' or complementary ways of coping with certain diseases that are indeed good alternatives to prescription drugs.
However, the trouble with listening to our instincts or our bodies when we have PsA is that it is a degenerative and destructive disease and the fact that damage is occurring may not be obvious until it is relatively advanced. Relief of symptoms is not the same as slowing the progression of the disease. The way I see it that's the main PsA conundrum.
Grandma J said:I also take a blood pressure med, and I do feel it is necessary--at about 50 my BPs started reading around 190/100. I went on a BP med that just never seemed to really work. So my internist said she wanted to add another med (Amlodipine) telling me the Amlodipine together with the first med would work better to bring my BP down. I refused to add and told her it didn't make sense to me to keep taking a med that didn't work. Oh, she gave me the usual argument doctors seem to do--that two will work better than one. I stood firm and dropped the first med. I've since been on the 5 mg Amlodipine for about 5 years now and it works--alone--like a charm! I'm not certain, but I just think doctors aren't hesitant to put a person on as many meds as possible (that's just my opinion) and a couple people in my life are ruining their health taking all the meds their doctors are throwing at them. My husband is morbidly obese, has had a couple of grand mal seizures recently, has serious liver and kidney damage, is now being studied for diabetes, and I feel like we can mostly point the finger at all the meds he's taken since his late 20s. His doctors "piled up" the meds--a few for BP, a couple for cholesterol, a few for lungs, several for pain, some gout meds (including Plaquenil and prednisolone) and now a seizure med.
There are many natural ways to relieve pain. I never understood how ice packs could work, but they do! Heating pads work very well, too! When my back hurts I sometimes take an ice pack and my heating pad to work. I've even stuffed the ice pack into my waistband if I had to spend time standing or walking. I'm not sure if ice packs or heat can stop PsA damage, but it does take down swelling/inflammation.
If I was 28, I'd be especially cautious with meds. My husband is in very bad shape from a lifetime of them. It sucks when our liver and kidneys start failing and now there aren't many options for him. He's finally realizing that eating healthy, exercising and using the ice packs and heating pad for some of his pain are very effective and helping him feel a lot better.
I apologize if I sound opinionated. I just wanted to express my point of view for what it's worth. I'm definitely not an advocate of going "all natural", but have to admit I gave all the natural remedies a try before I went on Enbrel. If the natural approach works, go for it! Listen to your instincts--your body will tell you what works and what doesn't! And, hopefully, you will find the information here as food for thought that will help you make decisions about how to treat your own PsA.
Thanks so much for clarifying, Grandma J.