So sorry Gina. I have had pain reduction with prednisone ... not complete but 75%. At first in order to reduce the pain, my Rheumy prescribed diclofenac for 2 weeks (slow release 75mg)- I could not walk the stairs at that time. And even now, I take it 2x/week.
Although I read for many that methotrexate works great, I could not tolerate it. I had stomach issues and a cough/throat flem which everyone said was not due to the drug but after I was off it for 2 months, the cough disappeared. There are many options out there. You WILL find one that works for you - our bodies are not all the same. Good luck!
Who thought the cough couldn't be methotrexate? As you know - they are wrong. You can stop the mtx altogether with no problem and see if it improves.
Bloating is a common problem with Prilosec/omeprazole - if you have possible acid problems try using ranitidine/Zantac. It does the same but in a different way so the side effects are different.
If you have painful joints I'd suggest it isn't PMR you have - very few of us have joint problems (I don't care what doctors suggest that PMR is joints). If the pred didn't help at 20mg - there is nothing to stop you dropping fairly quickly to 10mg or even 8mg - that is where the care with reducing starts as that is the amount of pred that is about the same as the body would normally produce as cortisol, the natural corticosteroid.
Someone needs to put their thinking cap on - not just dismiss your concerns without knowing what they are talking about.
Gina, I have had a recent experience with methotrexate. Have been hesitant to respond because every person responds differently and has different needs. My PMR was so bad at the beginning that I was unable to even brush my teeth without help. Had it not been diagnosed I'd be in a nursing home today. I was seized, arms would not move, I could barely walk, had to have help even to sit on the bed. What a painful nightmare.
My internal doctor started me on 20mg prednisone and that was a miracle. However, my condition continued to worsen. A rheumatologist and a specialist in autoimmune diseases, saw me and bumped my pred to 60.
I was feeling so rough in the beginning months, he put me on methotrexate to help me reduce the prednisone.
Well. A month after beginning the methotrexate, I developed a blood clot in my leg and it broke, going to my lungs. I presumed my breathing issues were from the prednisone. WRONG. I'll never presume again.
An ER visit, hospitalization, blood thinners, swollen legs (still) more drugs for the edema, compression stockings convinced me to check out strange side effects. note: My leg never hurt where the clot was located. The only sign that anything was wrong was severe swelling of the leg. A doppler was used to diagnose the leg, then they studied my lungs when I mentioned I was struggling to breath. What a shock!!!
Thankfully, I'm at 10mg of pred now (am in my 10th month of PMR) and will remain there until life is less stressful in my family. My doctor said, "If you want to improve, you will go slowly. After 10mg, you will not reduce your prednisone more than 1mg per month. You can go by 1/2 mgs if you choose. This requires patience,"
He was not kidding. I've gotten that lecture from his APN, too. Slow. I'm going to stay on the 10 for at least 2 months and reduce by 1mg until 8, then will reduce by 1/2 mg for a while.
The doctor stressed the likelihood of a flare if I rush the process and that a flare could be difficult.
I'm not interested in more problems. He also warned that, for me, a low dose of prednisone, like the blood thinners, might be for life.
Tell your doctor about your breathing issues. Every body is different. Look up the side effects of the methotrexate, even print them out for the doctor. There are long lists on the internet that are sobering.
I told him I read that methotrexate could cause blood clots and he said, "Yes, that had been discussed in meetings." It is rare, I'm sure, but ... some of us specialize in rare.
I agreed to try the metho, but also took myself off by weaning off over three weeks. I didn't come off suddenly.
It has taken 6 weeks to feel a lot better, more energy, generally stronger. My hair is 85% gone, am hoping that will come back in soon. It's still falling out and I stopped the med 5 weeks ago.
My doctor did not get upset. They can see what happened and realized that my body did not do well on that medication. I'm still able to reduce the prednisone, slowly, too. The APN added methotrexate to my long list of allergies. Lasix is another recent allergy med, too. What a pain. They told me that people with multiple autoimmune diseases present with multiple drug allergies. Had never heard that before, but it is true for me.
Best wishes to you and I'm hoping you feel better soon.
Sorry I can't help with advice, and I know when you said you were ready to "flush" all the tablets you didn't really mean it. But I thought It wouldn't hurt to remind everyone that they must NEVER flush unused tablets down the drain. Always take them to the pharmacy for proper disposal. The fish and other animals in the lakes, rivers and seas have enough trouble dealing with the medication we've already passed through our systems, let's not give them more....
All the best to you, Gina, for a good resolution of the current problems.
Yes, the clot in the leg broke off into many clots, went through the heart and into both lungs. The doctor also talked about 'micro clots' throughout my body. The ER doctor looked me in the eyes and said, "Most people with this problem don't make it here." I never knew! Who knew! The clot in the leg was not red (behind my knee), never ever hurt, my leg was huge with swelling and I thought, "Prednisone." *sigh* Could not have been more wrong.
I have been sternly warned to not miss a dose of Eliquis (take two pills a day) and that it is likely a med I'll take from now on. Ugh. Once off the methotrexate, I stopped having a sick feeling when I took Eliquis. They didn't work well together.
The other issues that was an unknown, I've had to have heart studies because clots can damage the heart (If they don't kill you first.) So, from now on, I get to have an echo every year. There are two heart issues that will be monitored from now on. The team of doctors is growing and all I want to do is get well and live life! They are very good doctors and I am grateful.
The doctor told me it might take up to two years for the clots to assimilate. That shocked me. With tons of blood thinners in the hospital via shots, all the medication... my thinking was that they will "just go away." Nope. They don't work that way.
Problems with breathing should be taken seriously. My mistake could have taken my life. It's not worth ignoring a problem.
When in doubt, check it out. Goal for 2018: Get better! )
Oh my, what an ordeal , so glad you came thru all that. Scary
Thanks for your response.
I have only been on 6 doses/weeks of the metho.
and I am going to stop taking it. I believe the blaoting was first from metho, and them was compounded from the prilosec. I am not sure on cough, but i have to believe my shortness of breath is from that profound bloating
I agree, some can take meds and never have side effects and handle it all w/o incident
I have never been that person.
So I will continue to come off the Pred, and see how things go.
I responded with new plan to from doc to Eileen, and would live your thoughts.
I'm not entirely sure, but I think prilosec needs to be discontinued over time, not overnight, as there may be rebound acid production if stopped suddenly. Please check if you haven't already.
Yes that is very true, but I have only been on it a week, and I never had heartburn, just crazy bloating from metho/ pred, . that got worse with the prilosec..