I agree Seenie. I'm not going to add the Avara. I will remain on the MTX and Sulfa until I see my rheumy in January. I was suppose to inject MTX last Tuesday, but didn't. My husband and I were traveling and had a concert and I didn't want to feel ill while we were away. I was feeling pretty darn good until today when the burning in my hands and hips started again. I must say something must be working because the burning hasn't been bad for a few weeks. Strange thing....my thumb has been swollen for weeks and when I missed the MTX and all this week the swelling and pain has gone down a lot. I'm debating taking the MTX...maybe just stay with the Sulfa one more day and see how I am tomorrow. I see my doctor Nov 4 and would like to go back to work. I'm thinking that living with some daily pain is the new me and I feel the pressure to get back on the ship. I miss it and I also am stressing over LTD, just filled out the forms and have been avoiding it as I really wished to be back to work by now. I'm having an emotional, sad day, a little pity party, however I will get over it and deal. Thanks for the feed back :-)
Seenie said:
Hi, Tara, I'm cross-posting here because you mentioned Arava on two threads. Arava and MTX together, I think, is a real last-ditch attempt at avoiding biologics. It's a combination that some docs don't like to use, because it is extremely toxic. My rheumie's advice was "On Methotrexate you shouldn't drink. With Arava you MUSTN'T drink." I got a small amount of improvement on the combination, but when I went on a cruise, I allowed myself a measured 70 mL (half a small glass) of wine a day. Bloodwork when I got back indicated that my liver couldn't take even that small amount. I was really walking on the edge with that combination. I was on triple therapy (MTX/sulfasalazine/hydroxychloroquine) for several months, and it did nothing for me. Arava helped a tiny bit: if the improvement on Arava/MTX was a 1, the improvement on Enbrel was a 10. For me, anyway -- your mileage may vary! And during the year of experimentation with this drug and that, my hips sustained terrible damage, while the rest of me felt like a bag o' dirt. I don't want to sound negative ... OK, I'm negative. ;-) I agree with Jen (on the other thread): I think you need to open the conversation about biologics with your rheumatologist. What does your husband think? Will he be going with you to your next appointment?
You're lucky GrumpyCat!! It's been 6 months of MTX 25 mg injections and although I was feeling less side effects after switching to injections, I'm still having them. I find they vary, adding the Sulfa increased them again. I make sure I eat well daily as I have to have something solid with the Sulfa or the nausea gets brutal. Unfortunately the fatigue and slow down has contributed to a steady increase of weight. I went from a size 6 to a current 8/10 and growing. I was highly active prior to the PSA progressing and have always had to work hard to maintain my weight, both by watching my diet and exercising daily.
GrumpyCat said:
I have had relatively no side effects from MTX. I started taking 3 mg of folic acid a day two weeks prior to starting MTX. I take 15 mg a week by subcutaneous injection. The day after, I have a very small amount of GI upset (no nausea). I eat rice and veggies that day, and it makes me feel much better.
TaraLynn said:
Thanks JDT. I missed my MTX injection last week and haven't did it yet. I am also taking sulfa, but to be honest I'd l like to stop it all. I received a prescription for the Avara, however I'm thinking I won't be starting it as the side effects look similar to the MTX and I've had it with the nausea and fatigue.
It's been over 6 months now and living with the side effects from all these meds has been challenging. I will be calling my Rheumy this week. I haven't had great success with anything so far, in fact the side effects (nausea, fatigue and flu like symptoms) have decreased my quality of life immensely and I really just want and need to get back to a function life. I'm tired of waiting for the side effects to decrease and feeling as though all these drugs will have a similar impact. Has anyone had no side effects from meds? For me at this point.....I'm highly doubtful .....
JDT said:
I couldn't tolerate Sulfasalazine or Arava, so I can't imagine a combination of the two! What it seems is that everyone is so very different that we can't even begin to compare medication experiences. The only thing that ever positively impacted my inflammatory markers was MTX. I'd go so far as to even say it put me in a sort of "remission". I went off meds for a couple of years (stupid mistake!) and then went back on it and had an allergic reaction.We've yet to find something that works since. I'm on my 3rd medication since then (started yesterday), so it's a game of wait and see. It's so hard and it is all such trial and error. I hope it works for you because we all deserve some relief!!
I agree, the side effects definitely effect quality of life. I had ZERO side effects on Humira. However, it did NOTHING to reduce my inflammatory markers and I actually ended up in pain when I hadn’t had pain previously. It’s definitely discouraging. I started Remicade infusions the day before yesterday and was REALLY fatigued yesterday, but that’s it. No nausea, thankfully! Crossing my fingers on this one, though it seems SO major to sit through infusions on a regular basis. I’m afraid to admit it, but my knees feel better than they have in a few weeks. Could it really be related or coincidental?
TaraLynn said:
Thanks JDT. I missed my MTX injection last week and haven’t did it yet. I am also taking sulfa, but to be honest I’d l like to stop it all. I received a prescription for the Avara, however I’m thinking I won’t be starting it as the side effects look similar to the MTX and I’ve had it with the nausea and fatigue.
It’s been over 6 months now and living with the side effects from all these meds has been challenging. I will be calling my Rheumy this week. I haven’t had great success with anything so far, in fact the side effects (nausea, fatigue and flu like symptoms) have decreased my quality of life immensely and I really just want and need to get back to a function life. I’m tired of waiting for the side effects to decrease and feeling as though all these drugs will have a similar impact. Has anyone had no side effects from meds? For me at this point…I’m highly doubtful …
JDT said:
I couldn’t tolerate Sulfasalazine or Arava, so I can’t imagine a combination of the two! What it seems is that everyone is so very different that we can’t even begin to compare medication experiences. The only thing that ever positively impacted my inflammatory markers was MTX. I’d go so far as to even say it put me in a sort of “remission”. I went off meds for a couple of years (stupid mistake!) and then went back on it and had an allergic reaction.We’ve yet to find something that works since. I’m on my 3rd medication since then (started yesterday), so it’s a game of wait and see. It’s so hard and it is all such trial and error. I hope it works for you because we all deserve some relief!!
That sounds very positive JDT! I hope the infusions are successful for you!
JDT said:
I agree, the side effects definitely effect quality of life. I had ZERO side effects on Humira. However, it did NOTHING to reduce my inflammatory markers and I actually ended up in pain when I hadn't had pain previously. It's definitely discouraging. I started Remicade infusions the day before yesterday and was REALLY fatigued yesterday, but that's it. No nausea, thankfully! Crossing my fingers on this one, though it seems SO major to sit through infusions on a regular basis. I'm afraid to admit it, but my knees feel better than they have in a few weeks. Could it really be related or coincidental?
TaraLynn said:
Thanks JDT. I missed my MTX injection last week and haven't did it yet. I am also taking sulfa, but to be honest I'd l like to stop it all. I received a prescription for the Avara, however I'm thinking I won't be starting it as the side effects look similar to the MTX and I've had it with the nausea and fatigue.
It's been over 6 months now and living with the side effects from all these meds has been challenging. I will be calling my Rheumy this week. I haven't had great success with anything so far, in fact the side effects (nausea, fatigue and flu like symptoms) have decreased my quality of life immensely and I really just want and need to get back to a function life. I'm tired of waiting for the side effects to decrease and feeling as though all these drugs will have a similar impact. Has anyone had no side effects from meds? For me at this point.....I'm highly doubtful .....
JDT said:
I couldn't tolerate Sulfasalazine or Arava, so I can't imagine a combination of the two! What it seems is that everyone is so very different that we can't even begin to compare medication experiences. The only thing that ever positively impacted my inflammatory markers was MTX. I'd go so far as to even say it put me in a sort of "remission". I went off meds for a couple of years (stupid mistake!) and then went back on it and had an allergic reaction.We've yet to find something that works since. I'm on my 3rd medication since then (started yesterday), so it's a game of wait and see. It's so hard and it is all such trial and error. I hope it works for you because we all deserve some relief!!
Took MTX last night and had a pretty harsh head ache in behind the eyes. Went to bed and when I laid down it felt like my heart was in my head. Took forever to get to sleep! Woke up this morning and headache is still here and my eyes are so sore and sensitive to light. Thinking I should call my Rheumy and maybe cut back on the MTX, or just take Tylenol on top and hope this goes away sometime soon....