My sister is only 33 and was recently diagnosed with RA. She went to two doctors. The first dr. prescribed Predinose, pacquenil, and humira/enbrel.
We did not like the first Dr.'s bedside manners/professionalism, so we went to a second Dr. who prescribed Predinose & Pacquenil, but is holding off on the humira/enbrel until after seeing if Pacquenil alone will be sufficent. I hear it takes about 1 to 2 months to see if it is effective? Can someone confirm this for me?
Since Pacquenil is supposed to lower the immune system, I have already undertaken to clean the house & scrub the bathrooms down to decrease germs so she doesn't catch a cold. Now I am wondering what else I can do to help???? As RA sufferers on this board....is there anything u would want ur family to help u with? I would like some ideas as to what more I can do.
Her Doctor hasn't prescribed physical therapy or masssage therapy yet. But one of her shoulders has been somewhat stuck (she can't raise her arm up more than 1 ft. or so. I was wondering if I should massage her shoulder to loosen it up and then kinda manually help her lift her arm up so that her muscles don't atrophy while waiting for the medicines to kick in? Anyone have any ideas on this? Thanks in advance for any advice you all may offer.
What a wonderful brother you are to show such care and concern for your sister! The two of you must have a wonderful relationship, and that is so refreshing to see.
Everyone will chime in as the evening goes along and they check in, but I just want to say how touched I was by your inquiry.
Good luck to you and your sister. Please encourage her to become a member here also - it is a great place for friendship, advice, and a sympathic ear, and sometimes a slap upside the head if you need that too!
Welcome, Bro!
I agree what a great brother you are. You sister is so lucky to have someone as understanding as you. Yay to you for trying to help.
It would be wonderful to see your sister here too.
I know heat feels best to me when my joints hurt but so many people are different. Some like ice packs, me I can't tolorate ice packs anywhere at anytime.
I am sure there are those that have been dealing with RA a whole lot longer than I have that will post some really great advice. Just keep checking back.
Welcome!
First off, just let me ask you one question....could you please be my brother?
Yes, most of the dugs we take take time. It is also a wait and see game to see what combination of drugs works. Most doctors start on the lighter stuff ie: plaquenil, before they work up to the heavy stuff like enbrel etc.
If massage feels good for her it might help, sometimes the joints are too painful to work but some light massage might help.
Hi bro,Not knowing what physical limitations your sister now has due to her RA, I will just say that I am always so grateful when anyone offers to help me with just daily routine things like vacuuming, laundry, bed making, dishes (if you don't have a dishwasher, scrubbing pots and pans can be quite painful with bad hands), hair washing, typing, etc.
Again, not knowing if/what sis has physical difficulty with, she might be interested in products that are adapted for those of us who need them. My PT gave me a great little catalogue from Functional Solutions (you can Google them) and I've been able to obtain a few gadgets that have helped me with day to day things that I can no longer do without modification.
Continue to be a compassionate listener when sis needs an ear.
And, finally, I cannot stress enough the need to study, study, study this disease. Since my RA diagnosis, I've spent countless hours on the net educating myself so that I can be an active participant in my own healthcare plan. Knowledge is power!
I admire you and envy your sister.
K.
Hi Bro, 'pammy' I WANT HIM!!
This is such a complex disease that it takes time to sort out all of the angles. We struggle with acceptance everyday, we are usually in denial for the first part (it took me 5 years!) , waaaay too long to wait to treat this stuff. Now, I have bad joints in my feet and hands, especially and various other locations. Then we start the medications and are afraid of the drawbacks, then we say, 'Hey we need them, so we take whatever....to feel better. Then we WAIT for them to 'work' and sort all this out with the doctor. If the drug chosen is the right one we can maintain our 'normal' lives, if now we keep trying to find a fit with our particular level of pain, swelling, stiffness. This can take 6months to a year. It isn't an easy disease to deal with.
I wouldn't encourage exercises, if you think it is going to solve the arthritis part of the problem. The drugs will chaise away the swelling, stiffness and pain.
Most people feel better after a warm shower, a cup of coffee and a loving chat with a friend, spouse, brother!!(you are offering the most valuable treatment, that is love and support!!)
The mornings can be the worst. Housework, is always a challenge, and the vacuuming, the changing the sheets, the heavy stuff (above the head, of course) I couldn't get my clothes OUT of the washer when my RA was at it's worst. I couldn't cut my own meat!, I don't know your sister's limitations but there are special 'one touch can openers' , large handled cooking spatulas, spoons,etc. that help us. I had trouble driving the car and getting the seat belt around from the back after sitting down!,(some brilliant person suggested draping it around the sent not letting it go all the way back!) my husband would always fasten my seatbelt for me when I'd get into the car. (what a dear he is).
Plaquenil is a good start and I hope will help your sister., Prednisone should give her immediate relief! Good choices. If she doesn't see improvement right away with the prednisone I'd call and ask for more. Then as she sees the other drug working she can try less prednisone. I started with 15mgs of pred. I can't remember how much Plaq I took at the beginning? Then I went to methotrexate, because of a severe flare up I now take the super drug (Remicade) also.
Please keep asking questions, if you don't see the answers here and remember we 'never close' , someone is here 24/7!
You are such a dear to write and connect with us for your sisiter,
Lynda
Yep...you are my hero! Helping with the daily stuff is huge. Listening is huge! If you can let her just get some of the emotional stuff out that would probably put her on more stable ground.
She is starting out like most, very cautiously and then they will be working to find a combo that will work on her the most. It will be a lot of wait and see. She WILL get frustrated with the whole process at some point, and then she will HATE all of the hoops(insurance, doc appts. etc). Be there for that and let the frustration roll off your back.
The massage thing. Sometimes I have my hubby lightly rub what is not hurting as badly. So, rubbing her back or the lower arms. If there is inflamation in the shoulder it is not good to stir that up. Soaking in Epsom salts somtimes losens me up so I can move and stretch. She does need to try to keep the range of motion. Anything you don't move(even with some discomfort) you will lose control over it, and it will atrophy. She will need gentle moves though. I also have a parafin wax bath that I use on my hands and feet joints. I try to use it at night, and then I take the wax and manipulate it after peeling it off. That way I get some strengthening of my hands. I have lost strength in my hands since being dx six months ago. I hate it, b/c I have always loved to lift weights as opposed to do cardio any day, but have had to reverse some of that.
Hope this helps...sorry it is so long. shel
its the little things that help, opening things up, serviing food, drawing hot baths, massages.. gawd i would love/ kill for those daily.. lol.
making ones bed, fluffing pillows.. its just being there and she is very lucky to have someone so concerned, its rough going thru it alone.
Not much to add to others word of wisdom. But I agree she is lucky to have you!
I SECOND WHAT MARY SAID......SHE IS LUCKY TO HAVE YOU!!
Your sister is so lucky to have you!!!!! I would ask her what she needs. But help with household chores is always great!!! I am 36 and I understand what she is going through.... I am so sorry that she is hurting and I applaud you for trying to find out about this disease. She is truly blessed to have you. As for the meds.... they do take a while to kick in. Let us know how she is doing... Dito to what everyone has alreaady told you! I think we would all like some of our family members to take a more active roll in educating themselves. But then again they have probably thought the same thing with one of there issues. I applaud your effort Bro. Yo Bro! Well, everybody has told you how wonderful you are so I guess I don't have to...:-) Seriously, it the people in our lives that don't understand the ups and downs of this disease that make this so much harder to deal with. I, like GoGo and a couple of others on AI, am using antibiotics to control my PRA. If you want, Google the PDR for side effects of most of the drugs - Minocin is one of the most mild out there. I was 'early onset severe' and AP (antibiotic Protocol) saved my life. Besides www.roadback.org that GoGo already told you about, you might want to get the book The New Arthritis Breakthrough by Henry Scammell. Fascinating look at the politics behind rheumatology. Hugs, Pip
The little things do make a big difference. And ask her, listen to her. She will know what she needs and what she struggles with.
And above all just care about her. Let her know you are willing to listen if she needs to vent.
RA involves a huge emotional process too. Grief and loss are huge. Depression is usually part of the deal. It is not easy stuff to get through and it takes most of us a really long time to learn how to manage it - 3 to 5 years in my opinion. Most of all she needs to be loved through this journey and as only she can do it, it can be a lonely one.
I absolutely adore seeing family members like you. Some of us aren't so lucky.
I wish your sister the best. We would love to meet her if and when she is ready for that.
Take care.
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