Advice for Better Living Archives

Dear Helpers. I,m a newbie .My mum has Polymyalgia rheumatica. Has had it for nearly 2 years now. On 16mg Prednisone. Its not subsiding. I,m not sure if you can help me but here goes. Mums weight has ballooned. Really ballooned. She is so depressed, feels ugly hardly eats anything and is still as active as possible. Is there a special diet, alternative, anything that I could possibly suggest. Mums never been big nor had dieting problems, I know it must be Prednisone. I cant convince her shes still there. If you know what I mean. Any advise would be deeply appreciated....Regards ...Rosemary.

Click here to help Rosemary

Rosemary, Your Mum is so blessed to have your keen awareness, concern & support! If your Mum is not getting good results with her current meds, she should discuss it with her Dr. Your support could be valuable there, as well. Finding what meds work for the individual can take time & can change. It is often frustrating, but necessary to perservere. I have Fibromyalgia & Rheumatoid-both for many years, & have found that diet & exercise make more of a difference than I ever thought possible, in conjunction with good medical care. Consulting with your Mum's Dr. is the first step to take, before starting anything new. Reccommendations can vary greatly. My first rheumatologist was a 300 pound man who smoked & would not reccommend diet but when I pressed him on nutritional supplementation, he did tell me what to avoid, & what not to combine. Prednisone, while a very helpful drug for tough times, is infamous for causing weight gain. I was on it for 3 yrs & just got off it 2 mos ago. Personally, I have found over the last 1 1/2 yrs that the right diet & exercise for your body make a huge difference. I eat right for my blood type now & swim in a heated pool, doing Arthritis Foundation Aquatic Programs classes. My joints tolerate it, range of motion improved & muscles toned up. It greatly helped both conditions. The books by Dr. Peter J. D'Adamo are "Eating Right 4 Your Blood Type" & "Cooking Right 4 Your Blood Type". I cut out wheat, dairy, corn & pork. I actually eat a wider variety of foods regularly & have lost weight, & I never thought I would need a diet either... as I had always been petite. I love to cook & have always eaten all foods, now I give my body the right fuel & it really runs better.
Wishing you success on your journey. Healing requires more than medicine. Awareness & info make a difference in finding what works. So do emotional support & care.
Wishing you & Your Mum many Blessings,
Joy


I also had a problem with prednisone was on 15mg daily. My face balloned and I started to gain weight-I found out that avoiding starchy foods (potatoes, corn) and went on a lo-carb diet this helped me keep my weight down and also my face is going down also. The great thing about this diet is you can eat all you want so you don't get hungry. hope this helps. -Linda

I am always looking for breakthoughs and ideas, like everyone is. I have had RA a very long time and work full time. However, the constant exhaustion is catching up with me. I have been practicing yoga for 5 years now and that hlps with relaxation and range of motion. But I never feel rested. I wake up tired. Proper nution does not help either. I am considering taking Enbrel.

I was not able to take Enbrel because of constant infections.

But! A dear friend of mine, who has juvenile onset RA, has been taking
Enbrel for several years now.

Last year, she did a triathalon. She didn't win, but she *finished*.

She has 2 small children, and Enbrel really turned her life around.

As for me, I had to move on to Remicaid. <shrug>

My .02

Smooches,
Laura

Help! I need advice. My rheumatologist put me on Arava. After 3 weeks I developed a whole mouthful of sores so painful I could barely eat. This is listed as a rare side effect of Arava. This went on for a week. Then I had severe headaches that came out of nowhere on 2 different occasions, which I suspected could have been caused from a 12-day Prednisone pack or a combination of the Arava and Prednisone. But my R has always insisted that none of my medications cause headaches. Then my blood pressure was unusually high before a procedure at a pain clinic and at several doctors' visits, but it was normal when I took it at home. My family doctor said that I could have "White Coat Syndrome", but it seems my blood pressure was higher at this time than in the past. So when I tell my R that I am very concerned about the Arava, he has an Arava blood level test done, all I am told over the phone is that I still have Arava in my liver, so he gives me an elimination drug to get it out of my system, and now I am starting to hurt in all my joints. Was he too quick to take me off the Arava or should he have tried me on the lower dose. I was taking the 20 mg. tablets, and I was started off on a 3-day high dose of 100 Mg. tablets. He got mad when I told him I was very concerned about the Arava, especially because of what I had read on the Internet. When I tell him my concerns, what I want is his input and to tell me if I should hang in with a drug on a lower dose but instead he gets mad and jerks me off the medicine, he has done this also with the Methotrexate. He is treating me like a hypochondriac instead of a patient that needs help. Sorry that this is so long but I really need some objective advice. Thanks for any help.

hi Reggie, how about trying a new rheumie? i know that's hard but maybe you can get a get a referrel from a site like the Arthritis Foundation...it is worth a try...also when you go in to see your docs, make sure you have all your questions and concerns written down and as they answer them , write their responses next to your questions...don't let them hurry you...Another suggestion is to keep a therapy book...basically that's a spiral bound notebbok where you keep all these questions and answers, where you keep a doctor's visits diary (like when went to see whom and what was the outcome). This will help you gather thoughts and concerns and keep track of fluctuations in how your body responds to each med. Also, try and join a supprt group...this will help in getting to know others and what thry're going through (you won't feel alone anymore) and it will enable you to compare notes with others going through what you're going through. 

remember, you may have a "condition" but it doesn't have you! Seize the day!

Denice 

Dear Reggie,

Live as full a life as you can, and CHANGE RHEUMATOLOGISTS!

I went through five when I was first diagnosed, until I clicked with the R I 've had for over 15 years.

It's your body - you know if you're in pain or not.

Stand firm, and know that many in your community are behind you.

Smooches,
Laura 

Give Reggie some encouraging words

I've had RA for 2 years now, and its starting to deform my hands. I have a 3 month old baby girl. She and I make a camp on the floor for the day and stay there. I do the best I can with the RA and the baby. I'm too stubborn to let the RA stop me from taking care of her. If you have any ideas for baby care though, I'd greatly appreciate it. Thank you very much.

Two things came to mind Dawn with a baby. One is to get a caddy from the store, the kind you would put cleaning supplies in and tote from room to room if you were cleaning? Look for a small one that is easy enough to lift if full, or one on wheels if possible. In it you could put a bunch of stuff you would need for the day - diaper changing stuff, garbage bags for dirties, section for snacks and toys, etc. This would help you while you are camping out so you don't have to get up and down so much. Shoot, I did this before I had RA and it saved steps! Second, is a carpenters belt to hold things that you might need frequently and don't want to have to run and get but would be handy.

Here is another tip. I always give this one to new mothers. When you make the babies crib up, make it in layers so that if the baby wets in the middle of the night you aren't standing there making up a crib when you are stiff and tired. So if you layer the crib with a rubber sheet, regular sheet, blanket, etc. then put another complete layer on top of the same so that you just have to rip the layer off an throw it in the laundry till the morning. It works best if you have a full rubber sheet to shield the layer below. Of course, you have to have multiples of all this in order to do this but I found it very helpful. I'm not sure how much babies wet thru now with the disposables but my son was in Huggies and sometimes nighttimes were not leak proof !

If your hands are giving you trouble with snaps and straps etc, select clothes that are the easiest for you to use. Summer is coming up and
t-shirts and diapers are totally appropriate summer attire for an active baby.

I would also try to get the baby on a schedule that works for you. The floor camp out is something I think we've all used with our babies out of sheer exhaustion! As the baby starts to become more active, you will find that you will need to restrict her movements by a door or blockade but still need to have enough stimulation to keep her occupied. A few well bought toys that are stuck in the closet for the days that nothing will make her happy can be a life saver. I remember that my best girl friend gave me a toy for a 1 year old when my son was born! I thought it was a strange gift for a newborn but really appreciated it on the day that I was able to just pull it out of the closet and he was happy! No sudden trip to Toys Are Us when he outgrew the baby rattles. And then of course is the Tupperware/plastics cabinet. Best play place in any house. Only cabinet without a lock and never ceased to amaze any baby in the house.

I hope these help! Diane W

i have had R.A since i was 15(am now 49). i raised foster kids for 9 years and one of my kids had a kid. well i cared for the baby while mom was at school...i have badly deformed hands too so i learned to adapt the baby to me. when i needed to carry the baby i had one of those baby carriers with the handle and seatbelt and when i needed to move around i would scoop the baby up and use my flexed elbow as my hand. worked great. i also learned that if i leaned over to pick up the baby ( andwe grew together) she would wrap her hands around my neck and i could again use my forearms and bent elbows to hold her. i have been told by therapists that i the most naturally adaptive person they have treated. i really do not think of why i can't do something i can usually find my own method. of course i can't do some things(run,play on the floor,get in or out of the tub...)but i CAN do so much more. thank you for your newsletter and i hope this helps the young mom. i am finally feeling comfortable enough to try to contribute what little i can. :)
KATHY

One thing that really helped me with my babies is a small, portable bassinet made by Daisy Kingdom. I couldn't always lower a regular crib, and I definitely didn't do well with a playpen, so this smaller, roll-able baby bed help tremendously... it only comes with 1 fitted sheet...so I went to work. Instead of making fitted sheets, I made something like a pillowcase out of old sheets for the bed. 1 large sheet made several covers for the bed, that way, when the baby would wet, spit or mess, I could change his bedding. I truly believe the investment in this portable bassinet was well worth it. -TC

I'd love to say I have tons of tips for you. My son is 11 weeks old. The main thing I've found is rest at the veyr least while baby is napping. Fortunately for me my son is a night kid. I sleep best during the day. So him being a day sleeper is helping me get needed rest. I also love my nursing pillow. Even though I'm not nursing. I was having arm problems when I'd hold my baby to feed him. With the pillow, no arm pain. Use proper body mechanic when lifting. Try not to stress over how you do things. I've as long as his needs are met how they get met is not important. So if it takes 20 min to dress baby, so be it. I've found I am becoming more picky about clothes I put on him. If I have trouble with an outfit, it goes in the only to be worn when Daddy dresses him pile. The important thing is loving your child. Hope this helps. -Wayney 

Mommys and Daddys, can you help?

What diets have worked for relief of inflammation? Is it necessary to become vegetarian? What works? Please comment.

Anyone have any luck with diets?

You might want to check out our Diet and Nutrition section. Several members have shared their experiences there. -KJ

I am not the diet master - I can only speak from my own experience.

I have tried all manner of "natural" cures - from 'royal jelly' to some green sludge that I had to gag down 3 times a day.

I have given up caffeine.

I have given up alcohol. <btw - not huge amounts, we're talking a glass of wine every couple of weeks>

I have given up red meat.

I have *not* gone completely vegan.

I have gone vegetarian.

All of these "experiments" lasted from 6 weeks to 6 months..... I couldn't tell a difference.

That doesn't mean that some people might!

My motto is: If your Rheumatologist says it won't hurt you - try it. Ya never know. :) -Laura