Wellness

[pigletsmom]

@LilacTree have you tried anything other than prednisone before? I know you haven't tried the biologics but I wasn't sure about the others.

I would guess she chose this based on your progression and since you haven't told her you don't want biologics. Hopefully she can come up with a plan for you. I know the prednisone works some but obviously not enough. This drug seems like it might knock you for a loop!

[Kachina624]

Maybe the doctor knows something your friends and relatives don't know.  I'd certainly listen to what she has to say with an open mind, and be armed with a long list of questions.

[LilacTree]

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@pigletsmom wrote:

@LilacTree have you tried anything other than prednisone before? I know you haven't tried the biologics but I wasn't sure about the others.

I would guess she chose this based on your progression and since you haven't told her you don't want biologics. Hopefully she can come up with a plan for you. I know the prednisone works some but obviously not enough. This drug seems like it might knock you for a loop!

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@pigletsmom 

My first drug back in 2004 was methotrexate.  I did nothing but vomit for two weeks until that RA doc took me off it.  The next med was Plaquenil which worked beautifully for about six months when I was taken off it because I developed an allergy to it. My PCP then put me on prednisone, 15 mgs.  That worked very well for the pain, but at that time my RA was still very new.  I have not been on an RA med since then.  I managed with 10 mgs of pred and ibuprofen for quite some time.

In the meantime I was distracted by stomach and intestinal issues, as well as vertebral compressions and wound up with surgical removal of six inches of my colon due to chronic diverticulitis, which so far has been the only cure I’ve ever experienced.

I don’t want to do a complete health history here because right now it’s about the rheumatoid and newly diagnosed lupus.  I have many other issues. I’m pretty much a walking bacterial bomb!

[LilacTree]

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@sydsgma1 wrote:

@LilacTree  I was very aware of the side effects long before I agreed to it. Not only did I talk to my dr and the infusion nurses, but also spoke ton3 people who have had a lot of success with it. I

I did not choose this without greatthought . You know I like to be active, travel etc. and this has relieved all of my symptoms..no pain, stiffness, swelling etc. I did not feel well for a couple of days but it was manageable. 

It is a chemo drug, but is used very successfully for ra. That being said, I would be interested in why your dr chose it as a first biologic. And I do know your aversion to these drugs.

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@sydsgma1 

You are much braver than me, by far.  I admire your courage.

[BirkiLady]

@LilacTree  Give the Rheumatolgist a chance to explain her decision. Ask your questions. If possible, ask for an alternative medication. Weigh the pros and cons of that options, too. It may take a couple of weeks to make a final decision. Let her nurse know which choice you decide upon.

It's your body and your health! No one else is walking in your shoes or feels the illness as you do. We have to be our own best health care advocate. Blessings.  

[Drythe]

@LilacTree 

Please gather all sound Medical advice / information you can before you make a decision.

Is your provider willing to refer you to a pain clinic?  If so would you consider going? 

I have made this kind of decision, I wish you all the best.

[LilacTree]

@hckynut 

John, I’ve done a lot of research on this since the rheumatologist mentioned that this was where she is inclined to go.  My family is VERY negative on this and they do have experience on many rheumatoid illnesses within their own extended families. One of my nieces’ mother took her own life only a few years ago.

I don’t like biologics, you know that.  However, the black box warning on this particular med is the most specific and daunting one I have ever read.  It stresses a possible fatal reaction during the very first infusion, and several other very severe side effects. Look it up, if you have a mind to.  Black box warnings cannot be hyped, they are what they are.

 I know you have my best interests at heart, but you also are much braver than me.  You always find a way to survive by being so brave.  I admire you, as I admire so many others on this forum.

 ~ Ford 

[Lindsays Grandma]

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@LilacTree wrote:

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@reiki604 wrote:

I'm surprised the MD offered you this drug given your aversion to taking biologics. This drug is a biologic. I would speak to the MD to see what the rationale is for ordering this.

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@reiki604 

This ia a new doc, she doesn’t know anything about my aversion to any meds.  

I will go to the appt., let her give me her plan, and then ask many questions.  She will then find out soon enough.  As you said I want to hear her rationale first. There might be something in my labs that she feels I need this strong a treatment for.  No matter what it is, it won’t be this med.

Thank you everyone!!

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I remember how excited you were when you found this new doctor.  I was going to post my thoughts about the infusions and after reading this post I'll give my thoughts here.  Good for you, do not ever, under any circumstances let a doctor give you any meds you aren't familiar with.  If what she wanted to give is a cancer drug be very careful, my dearest friend who had breast cancer was on chemo for years and her last treatment was new, five days later she was dead.  It isn't always a cure.  You are a smart lady Lilac Tree, you will do just fine.

[Anonymous032819]

I would say to go to the appointment with an OPEN mind.

Ask your questions, tell her your fears and concerns about side effects, and have an actual discussion.

All medications come with side effects, even "natural" ones.

Above all, it's what ever you can live with.

You can continue on exactly as you are now, with zero changes to your meds, or you can come to a compromise and say something like, "I'll take it on a trial basis, for x amount of time."

Just because SOME have had adverse reactions to the medicine, does NOT mean that EVERYBODY does.

You may have no  reaction to it at all.

Have you considered that possibility?

We only want the best for you, and I'd hate for you to miss out on a chance to feel better, simply because you were afraid of what "might" happen.

                   

[NYC Susan]

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@Kachina624 wrote:

Maybe the doctor knows something your friends and relatives don't know.  I'd certainly listen to what she has to say with an open mind, and be armed with a long list of questions.

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I was just about to post exactly the same thing.

I would go to the appointment, listen with an open mind, and talk to this doctor face-to-face.  I would also bring a list of every question I could think of, and see what she has to say.

And I would be careful about getting opinions from too many people.  There are always going to be those with horror stories, and everyone is different.  Our medical history, family history, other health conditions, etc make each of us unique.  What's a nightmare for one person can be a miracle for another. 

Top priority for me would be hearing the opinion of a medically-trained professional who has examined me and has access to my medical history, etc.  That's not to say I blindly follow what doctors recommend.  I most definitely don't.  No one has to do something they are dead set against, but at least it's a starting point for a conversation about the doctor's reasoning behind her suggestion and what other options she would recommend.