About to start pred and Methotrexate-any advice, warnings?

I took both MXT and prednisone. The MXT was the first thing that worked for my lung, which is my biggest problem. After taking it for about 3 days, I felt my left lung for the first time in a year and a half. Yes, I had some side effects at first..especially nausea, but my doctor gave to prescription for that and I was okay. I've also used gravol to help the nausea. There is a new ginger gravol that helps the nausea, but doesn't make you sleepy. It works well and I've got my Mom using it too. If you have a choice, I wasn't crazy about the flavour of the losenges, so I usually buy the tablets. As mentioned, though the symptoms do subside. At the end I was doing the injections for 25 mg.

I'm am just switching to imuran though and so far it has worked okay. I was reducing my prednisone and ended up with pericarditis. So, they decided that the MXT wasn't working anymore...so therefore, the switch to imuran.

I'm still on prednisone unfortunately....it has not been my friend...for some reason I'm highly sensitive to it.

Good luck. I think you will be okay...It was my miracle drug for quite a while.

Annette

Hi,
I have been on methotrexate (mtx) for nearly 17 years. I became toxic to steroids after being pulsed. At the time my maintenance pred level was 80 mgs/day. I also went into steroid psychosis post pulsing which did not give us much alternative. I started on 15 mgs daily, had nausea, diarrhea, keep compazine and lomotil on hand. I was at this for a year then decided it was not working as much as we hoped.

In this time I also switched to a new rheumatologist who was very concerned about getting me down on the pred. He also felt that the mtx should go up to 25 mgs injection. I learned to do my own injections at this time as well. He also added in "leucovorin calcium" as a mtx "rescue". It is basically a "pumped up folic acid" which helps to reduce side effects of mtx. I do 3 5 mg tablets in 18 hours post mtx.

This "new" rheumy had a different way of doing steroid withdrawal, which takes a longer time, but does it with better results and less rebound flares. It too commitment on my part, but worked well. My pred level for 13 years now has been 1 mg alternating with 3 mgs e/o day. He doesn't want to go any lower.

I was at mtx 25 mgs for about a year, and the symptoms were escalating, but we are not able to go with pred increases. The decision of the team of doctors was to increase the mtx to 50 mgs. I stayed at 50 mgs for a few years.

Then, the ugly little lupus started to escalate again, and again, we decided to go to an uncharted level of increasing it to 70mgs IV weekly. We also added a oncologist to our team here as we needed someone who could handle the every day stuff of sle and mtx. I had a portacath put in at this point and got the mtx thru it. I learned to access the port, and then to do my own administration. When my oncologist retired about 5 years ago, I took over doing my own administration and my rheumy follows the blood work. I have stayed at 70 mgs now for 11+ years and my health continues to improve. My oncologist commented that the more he gave me, the healthier I got. He said that it didn't usually work that way, but lupus was writing its own rules.

Don't fear mtx. It is a drug used for a long time, and has a proven track record. Initially, I would not plan anything for the next 2 days after I took the mtx. Gradually, the side effects would diminish. I would find that I slept more, took longer naps, had joint pains, muscle pains. Those are caused by the die off of the inflammatory cells which seem to pool in the joints and muscles. Cancer cells are rapidly dividing cells. Inflammatory cells are rapidly dividing cells. Therefore, using chemo drugs have a similar effect on the inflammatory cells as it has on cancer cells. The rescue of leucovorin is used to slow down the killing off and to protect healthy tissues. My cousin commented that to clear out all the dead cells we "needed a garbage truck brigade" to do the clean up. It makes sense....just not sure how to accomplish it yet. Remember, at the beginning it is going to have a lot of clean up to do and so you will find more side effects until your body has gotten used to it....give it 4 to 5 months to do its job. If at that time, you are having more bad days than good days in a week, you need to review it with your rheumy.

Sorry this got so long, but it is a nearly 2 decades history.
Sally

Thank you all!

Dear writers,

So sorry I have not responded sooner. I was off site since I wrote that message, 10 days now. Back for more support! Thank you all for your letters of support and sharing all your experiences.

I feel fortunate that I am expected to be on this cocktail only for 3 weeks or so (I think I am being pulsed?). One week of prednisone (10 mg per day), then 10 mg Methotraxate, next week another 10mg MXT, then next week 12.4mg MXT. I am to continue prednisone throughout. That's it. She wants to see me after that. Even the pharmacist thought it was strange dosing, but I do trust my rhematologist. Rhem. stated that she thought the Plaquenil just wasn't holding me right now, so this is the plan.

Been on prednisone 2 days, so won't start MXT until next week. I read on the MXT information insert that you have to be closely monitored if on Folic acid. I already take Folic acid daily. Phlox mentioned taking Folic acid everyday except day of Methotrexate. Is that what most folks are doing? I'll probably check with my rhem. on that one.

Nutty, what is gravol? I have never heard of this. If it is natural, I'd prefer to go that way than another drug to control nausea (if that even happens to me).

Thanks again everyone--I feel better already!

Hi,

I hope the Methotrexate helps you a great deal, it seems to be especially helpful for joint problems associated with Lupus.

Folic acid is usually prescribed at a fairly high dosage as opposed to what you would find in a multi-vitamin/mineral supplement, I thought? I may be wrong there only going on what my late husband was on for RA.

Doctors seem to have varying opinions on it's use with Metho. The vast majority say don't take it on the day you have Metho, a few say it doesn't matter. It's important to discuss this with your Rheumy and get their opinion in your particular case.
There are others that only dose once a week with a high dosage of folic acid and it's not on the day of the Metho intake.

Good luck with it anyway may it give you good relief

love
Lily

I take mtx as well (currently 15 mg/week). It has been wonderful for me.

I'm not sure what the deal is with taking folic acid or not taking it on the day that you take the mtx. I've had 3 rheumies (due to moving) while I've been on this drug and NONE have had me stop my folic acid on the day I take the mtx. Maybe it is still a subjective opinion matter amongst docs. I was already on folic acid because I take an anti-convulsant that depletes it, so I just continued what I was on. Only take 1 mg/day, but have had docs talk about upping that eventually. Not sure how important it is and what a normal dose is to take.

I have had occasional bouts of nausea associated with the mtx, especially if I was bumping up to a higher dose. My nausea usually occurred the day after I took the dose. It sucked, but was manageable. The only side effect that I've really had to get fixed was that I started getting mouth ulcers once I was bumped up to 15 mg/week. I used to get mouth ulcers before my SLE was treated, but hadn't been getting them since being on treatment, so the doc thought they were likely from the mtx. He prescribed the Leucovorin "rescue" that counteracts that side effect. I take it 12 hours after I take the mtx dose and I haven't had a single mouth sore since starting this regimen.

I've been pretty happy with mtx and it has allowed me to get down to 10 mg or 5 mg of prednisone (depending on the time), so that's pretty good!! I'll take the lower doses of pred anytime!

kit

Thank you all for sharing your experiences with these meds. I just e-mailed my doc about the folic acid issue (I am already taking 2 mg per day as per earlier issues with mouth/nose sores), so hope to get her opinion before I take the first dose of Methotrexate on Wed am.

I also read in the Methotrexate insert that NSAIDS and aspirin were no-nos while taking it.

It sounds like many of you are taking Methotrexate on an on-going basis. Is that right? I guess my hope was that this infusion of these two drugs for a month would knock out my lupus symptoms for a while. Am I being unrealistic? I do not have internal organ involvement at this point.

THis might sound goofy, but I am scheduled to have my hair colored (single-process on roots) while on these meds. Has anyone been warned to forgo this while on treatment, or have folks had their hair colored without problems? I did ask my RHem. this, but haven't heard back yet.

Thanks again for all the input. I appreciate all who took the time to respond.

Hi Monica,
I hope that I can clear up some of your questions about mtx. First, the circular that comes with your mtx was designed for cancer patients. Lupus patients operate under a different list of directions than cancer patients.

The chemical structure of mtx and folic acid are ONE bond different from each other. Curtesy of organic chemistry, learned to read this stuff. The reason that I take leucovorin calcium - a "pumped up" form of folic acid - is to protect my healthy cells from the action of the mtx.
*** chemo therapy drugs work on rapidly dividing cells, which cancer cells are, by killing off those cells. They work on autoimmune disease because inflammatory cells are rapidly dividing cells, see a pattern here?***
The reason that the "rescue" is done is to protect healthy cells. Cancer patients aren't as lucky as we, so don't get to use the "rescue". That is why your literature said to not take folic acid. Since I have been on varying doses of mtx over the years, March will be 17 years, I think I have the experience that others may not have on what goes with what level.
I started at 15 mgs/wk, and then went to 25, then to 50, now for 11+ years at 70. At 15, I didn't need to do the rescue. Once I went to 25, I was put on it by my rheumatologist. By doing it in a series of 3 doses in 18 hours, it effectively protects the healthy cells. I have also found that by doing a B-12 inj, 1cc, that my side effects have been reduced by over 1/2. Why? Not a clue, but it does work. I do the inj at the same time I do the IV and rarely get nauseated or diarrhea. I do keep compazine and lomotil on hand, just in case, but not usually having to use it any more. My oncologist started me using the B-12, and have kept it up. It also helps to promote the red blood cells and I have found a tendency to become anemic, so that helps.

A steroid "pulse" is usually done in hospital and uses between 500 to 1,000 mgs of solumedrol in 24 hours. So, what you are being given doesn't meet that definition. You are using a tapered dose however.

If your rheumatologist isn't familiar with higher doses of mtx, then you may want to have him/her talk to an oncologist. If you increase your mtx dose higher than where you are, then you may need to use a rescue. Otherwise, I would not stop my folic acid on the day I take the mtx. You need it to help with protecting your healthy cells.
Good luck with your results.
Sally

Hi Monica,

It's true that most people here are on Methotrexate long term, actually I've not heard of anyone having it for just a few weeks. Pred pulses are quite common though and are used to try and damp down inflammation quite quickly and then stopped once things are under a bit better control. I'd say that it's quite likely that your doc may see how you go over the next few weeks and possibly keep you on Metho but stop the Pred..........just guessing though.

Drug Digest states the following about taking aspirin and Methotrexate:

METHOTREXATE (in Methotrexate Tablets) may interact with ASPIRIN
Aspirin may interfere with the kidneys' ability to effectively remove methotrexate from the body. It may also prevent methotrexate from combining with proteins in the blood to become inactive. If either of these things happen, blood levels of methotrexate could be increased and this could increase the risk of side effects............... If you must use aspirin while taking methotrexate, your doctor may want to monitor you closely for side effects. If you are experiencing problems, it may be necessary to adjust the dose of methotrexate. Your doctor may also consider prolonging therapy with leucovorin, a drug that is used in some cases to counteract the effects of methotrexate.Ask your healthcare provider about these drugs and this potential interaction as soon as possible.

Click to expand...

So it seems there are "possible" problems with taking both aspirin and Metho and that it needs to be monitored. (I say possible because we each of us are different in how we respond and react to a certain regime).Which is exactly why our docs watch both us and our bloods to see if a drug is affecting us adversely or a dosage adjustment is needed. I am sure though that we have some people here who take both aspirin and Metho and have no problems. There must be because many people take a daily aspirin for APS and also have to take Metho for their Lupus.

I can't help on the hair colouring issue but hopefully your Rheumy will be able to advise you. If this is only for a month then it might be best to wait and see how the drug affects you.

Good luck and as mentioned please bear in mind that we are all different and whilst it's nice to hear how others have fared it doesn't necessarily mean your experience will mirror that.

love
Lily

Thank you all again for your input. Started the Methotrexate this am--so far, so good. My rhem told me to hold off on the hair coloring because the drug can affect hair growth (? not sure why that would be affected by coloring? I was wondering if the drug might make the skin sensitive and therefore agitated by putting color agents on the scalp). So, I guess I have to live with my dark roots for a bit! I was also told to continue on 81mg aspirin (I do have the anti-phospholipid syn) but to avoid all other NSAIDS.

Pink Pearl--thank you for the chemistry lesson (it really does help me to understand what exactly is going on) and clarifying "pulsing." I will keep the info on rescue meds on hand; great to know. Thanks. So, may I ask if your symptoms are completely relieved by staying on Methotrexate?

Lilly-thanks for your thoughts on what my doctor might be doing (I will of course be talking with her about her thoughts are when I next see her). This is the first time I've had to ramp up meds for my symptoms and your thoughts are helpful to me.

Jessee-thanks for addressing the hair issue. I was surprised to hear about the straight to curly change! That would actually be a bit shocking! I guess this is another Lupus adventure!

I have really been enjoying hearing from others; this is my first real experience with asking for and getting support from others. I can now see why people sometimes spend hours chatting on the computer!