anyone hear re BRICH--Betsy | Arthritis Information

anyone hear from Brich (Betsy) haven't read anything from her from some time......hope you are feeling better

regards rose

Thanks for posting this Rose I have been wondering where Betsy is and how she is? Betsy we miss your frank and open information and of course your great sense of humour! I do hope you are okay x

Saw my Physician yesterday and I am to stay on 5mg Pred for another 12 months with blood tests every 2 months. I started at 10mg March 2006 and have slowly gone down to 5, 10 days ago. My last blood test showed a slight rise in ESR. I am managing okay with the help of Panadol so will do what I have been told unless anything happens then I am to contact him and see him again in April 2008. If the next few months go as quickly as this year has that wont be so long at all!

Hoping everyone has their pain under control in spite of PMR !! Betsy,

We all miss you. Hope you are doing all right. Wondering if you are at least keeping up with all the new posts. Thinking about you and hoping things are getting better for you.

Reni

Anemia from Inflamation is my latest diagnosis, girlfriends Thanks for thinking of me. You are all too sweet. I still read everyday, but sometimes just get too discouraged to talk about it. I've had this frozen shoulder and wrist thing for months, and it's really got me down. I went to my GP early one mornng in tears, both wrists swollen and in terrible pain. I was at 6 mg pred. They found nothing wrong in the xrays. She gave me a brace, pain med, and a regiment of 30 mg prednisone reducing to 10 in 10 days. Over 20 mg was great, but then it came right back. I started the regiment over again, and am now at 13mg, fat face and all, and the pain iscoming back again.

Here's a story for you. I've been going to the hematologist for 6 months for anemia. Last week he said I have "anemia from inflamation", which I had read about on the internet. So the PMR is causing my anemia. My blood is very low, and I am not able to fight the PMR effectively. So, The PMR causes the anemia, and the anemia causes the PMR. And, guess what, there are shots that will cure the anemia immediately so I can get well, but medicare won't pay for it. They would if I had RA or lupus or other diseases, but because PMR is not on their list, they won't pay for mine. It's 0 a week, so I can forget that. So, once again folks, we are just a bunch of whiners because PMR will "go away". We should be happy we don't have something permanent. I'm so sick of it. The hematologist didn't really even know what it was. Had to research it. He said he'll keep trying to figure out a way. Yeah, right.

So, I guess that's why I don't post anymore. It is just the most frustrating thing! Medicare will pay for viagra, but not for what I need to just be free of pain and able to work. So, that's why I don't post anymore. It's all negative from me. I don't like to be so discouraging. I read everyday, and hope you are all doing well. I don't read a lot from most of you. It's mostly new people. Did we all just give up? Love you for thinking of me.

tks for the update Brich Betsy,,,,,not the best news but just to say am praying for you and hopefully you will feel better soon....

VIAGARA???why don't u try some you never know,,,,,have u heard about the man who got a viagara caught in his throat and died from a still neck????

again keep in touch gentle hugs rose
correct that should be a STIFF neck.....senior moment rose Oh, Betsy, I was hoping that things weren't going badly for you, but did wonder if that's why you weren't posting. Do know that I (and I know lots of others here) am thinking of you and keeping you in my thoughts and prayers. Sounds like the anemia/P<R thing is a double-edged sword. I do hope your hematologist can come up with a solution. It's criminal when a person so desperately needs treatment, and insurance comes up with some lame excuse not to cover it. Is your frozen shoulder and all from the PMR, too?
I am still fighting this darn foot pain, although now it is different - from what I can gather on-line, it is adult onset flatfoot, or posterior tibial tendonitis, and if I'm correct, I maybe shouldn't have had the cortisone shot, as that tends to rupture the tendon int his condition. Hope it isn't to that point yet, but now have to wait for the referral to a podiatrist to go through. The waiting game again. Got a letter from our insurance co. the other day asking me to call their "health recoveries" # about my hip MRI, cortisone shot in the heel, and DEXA earlier this year. They are wondering if it all related, and was it the result of an accident or work? They'd love to shove the blame and cost on someone else. I told the guy, "I wish I could tell you yes to your questions. Unfortunately, it's just getting older and falling apart, and no, none of the procedures are related." Oh, well. They may want to "fire" me before too long. Seems like since I turned 45 years old (already too many years ago Rose,

I liked your viagara joke; that gave me a laugh for the day. I see I should hire a secretary or at least take the time to review my posts before I send them; I had a couple of typos in mine. Oops. Hope you get the gist anyway.

Reni

Thank you all so much. You make me feel better. Rose, you are too crazy! I laughed my head off. The last thing I need is something to make me stiffer!!!!

I hope you are all doing well. Reni, that's bad about your foot. You can't do much if you have foot pain. I have a close friend who has myopathy, and it's just awful. Her feet even hurt all night and keep her awake. Lyn and Reni, sounds like you are doing ok. I hope so anyhow. And Georgianna, Are you better now? For a while you were in such pain and really depressed. I feel like that's where I am now. But, we will survive, won't we? Love you girlfreinds. You're too sweet. I've never stopped reading the posts. I just don't like to be so down and negative, so I stopped writing. I did make one comment no long ago to someone who told Georgianna we should be thankful our's will "go away". It just makes me crazy that someone would think we should be grateful for this. Labor pains will "go away", but that's not a real comfort to someone who's dialated 8 with her feet in the stirrups. That's where we are now. Love to all of you. Rose, you are so nutty. Keep it up.

Oh Betsy, I could cry for you, and me and everyone with this terrible disease.
I was shocked when you said you can not get this drug because ins. will not pay, see if you can get it from the drug co. for free. I have a friend who needed an arthritis drug and it was 1,000 dollars a month, her dr. went directly to the drug co. and got it for her for free, unfortunatly she had a reaction after two injections and refused it after that, but it is something you can look in to.
I am wondering if this anemia from inflamation is what causes this extreme fatigue that goes along with pmr, that is my problem all the time extreme fatigue, I just want to lie down and sleep.
I am praying for you, Betsy, I really did miss you when you did not post, you sound like a wonderful caring person, see what you can do about getting the drug for free
Georgiana
HELLO ALL.....

speaking about foot pain, I have had shin splints, arthritic ankles for the past couple of years....went to podiatrist, fitted for orthotic inserts for shoes and feel much better....while there I complained about neck pain (had it since last Sept/06) he suggested I use orthogel advanced pain relief,,,,I have been putting this on for the past two weeks and have had great relieve in my neck....web site www.orthogel.com also a new thing out in Canada www.neutragel.com can be purchased at Shopper's Drugs. Hope u can reach these sites regarding their products...

note what they say about diabetes.....maybe God is answering some of our prayers at last, there's enough of us asking Him for help. Take care you all regards Rose HELLO AGAIN,,,,SORRY but it is "www.neuragen.com have to get my brain checked along with my feet and neck.....

Rose

Speaking about foot pain, ankles and feet allways in pain you mention arthritic ankles, what do you do for that? can the orthogel be used on the feetand ankles? I will check the website

Thank you for the info
Georgiana
It's so good to talk to you, Georgianna. You were in such pain for a while. You sound a little better, now. That is a great idea about the drug company. I didn't even think about that. I know people are doing that these days. I will surely talk to my PC about that. Maybe late this week I can get in to ask him about it. I have to figure out a way. I can't keep dragging around like this. And what you said about sleeping...I just want to go to sleep about every three or 4 hours. Then I'm good for a couple of hours. You are such a sweetheart. We must keep in touch. I just can't get over the space shuttle thing. How did you son manage that? That's just wonderful.Rose,

Thanks for the info about the orthogel and neuragen. Soemthing to check into. It is always interesting and informative to read what others are using for their aches, tho' what works for one doesn't always work for another. I have tried so many OTC products that don't work for me. Maybe my body is getting immune to it all, or I've got a high tolerance for drugs, or something. I, too, am plagues by fatigue much of the time. Ready to have a good long nap around 3:00 most days. Wonder if I am really getting a good sleep even on the nights I think I am? Wouldn't we all feel lots better if we could just get several nights in a row of quality sleep!!!

It's great to hear from all of you - Rose, Georgiana, and Betsy. I wonder where Janet (Puffy) is and hope she is doing better. I know she wasn't posting either because she was so down. Janet, I think of you, too, if you're reading this, and wish you well.

Betsy, isn't there something they can do for your frozen shoulder - maybe a cortisone shot? I have heard that sometimes the dr. can manipulate it to break up the adhesions, but sometimes that can be so painful they have to put the patient under. Doesn't sound at all fun. I hope you get some relief from that, as well as finding answers and getting help for your inflammation induced anemia. Keep us posted.

Take care!!!
Reni
Hi Reni, I had one cortisone shot, but it only lasted 1 month. They won't give them real often. I didn't know about the manipulation thing, but will check into it. I wouldn't mind some short term extreme pain if they could do something with this. Thanks for the info. I feel like I'm armed with enough info from everyone to talk to the doctors about different things. Love

Hi Betsy, welcome back!! I am so sorry that you have been suffering and so glad you are again posting. I was anaemic before taking Pred, this has resolved but I do remember how awful it was, and understand how you havnt got any spare enegy or emotion to do more than is absolutely necessary. I do hope you get help for this real soon.

Re your frozen shoulder: I had one a few years back and had a procedure done by a radioligist while having an Xray where they injected fluid into the shoulder socket to try to lubricate the socket to get some mobility. Unfortunately for me this was not sucessfull but I was told it does work in lots of cases. Passing this on so you have more info to ask questions about. The best relief I got was from a physio using ultra sound and then strapping with tape to keep shoulder and arm supported and immobilized. Have to admit it took nearly 2 years for recovery!! Sorry about that!

This is the shoulder I first had the pain in before PMR diagnosis and at first I did wonder if I had a frozen shoulder again until the pain shifted to the other side and then the midrift region... thought I was going crazy at this time with the pain moving around different places, Severe, Horrible Pain!!! that I'm sure you and most of us on this forum can relate to.

I am now on 5mg Pred and doing okay. My wonderful and only grandson (16) told me " your wrinkles are coming back, Lynie " so it appears my face at least is not so puffy. Our love hate relationship with the drug from hell may have had one benefit I hadnt considered.

If you can please let us know how your visit to PC goes.

Love Lyn x

Betsy your painfull wrist may indicate RA...and in that case they would pay for the medication!That's what I'm thinking but, I always test negatie for RA. I don't go to the rheumatologist til Aug 17. I'll see what they say then. Thank you.Betsy,

I've often wondered, and perhaps I don't really understand, but does a person HAVE to have the rheumatoid factor to be considered to have rheumatoid arthritis? I know that some people that test positive for rheumatoid factor do not have rheumatoid arthritis, but can it ever be the other way around? August 17 isn't too far off. I'll bet some of the docs just hate when a bunch of us get together like this and share info, so when you go for a visit, you can bombard your dr. with all the latest. Heehee! You are so right! And I'm armed and ready for them. You know what they say, "A little knowledge is dangerous". I've had the same thoughts about the RA. They are just so sure I have it every single time I go, because they say my hands are swollen. But the test is always negative. Well, since I've had this really bad relapse with the wrist and shoulder, both my wrists are visibly swollen everyday. That's my biggest question for them. Does the RA factor always show up in the blood test. Have a great day, girlfreind and thanks.a lot of people have RA with a negative factor (they call it sero negative)Because I don't have an elevated ESR, my rheumy is looking at other stuff before he issues a diagnosis of PMR. So he has tested for rheumatoid factor, plus all the auto-immune tests. he said an interesting thing....he said that sometimes RA can start with muscle pain and stiffness, very like PMR, and with no joint involvement. And later, up to several months later, a joint can suddenly flare up with pain and swelling and all the typical RA. And because my grandmother had RA he is wondering if I have that, even tho I have no sore joints at all at the moment. And my sister has lupus, so I think he is wondering about that too. Marianne,

If a person has sero-negative rheumatoid arthritis then, do they still have to have the swollen joints? I have been tested twice for RA in the past 5 years - negative - but I've never has swollen joints, just achy ones. My grandmother had RA, too. Some of these arthritic conditions are really confusing. Thanks for everyone's input.

Reni

Well, thanks for that info, girlfriends. Sero negative. Hmmm. I am really anxious to get to my next appt,now.

I called last week and asked if they could always confirm RA with a blood test. The person I talked to is an idiot, but you can't get past her if you call. She said "no." I asked her how she knew I don't have it then. She said because I don't have a diagnosis of RA.

Brilliant. I was trying to make her understand that I need my doctor to talk to my hematologist and find a way I can qualify for Procrit for anemia. I'm not asking anyone to falsify anything. It's written all over my last tests. "Consistant wilth RA....consistant with early stage or RA"...4 times on the last MRI's of my hands and feet. But, the airhead just advised me that I did not want to have RA. " I don't want to have it" I replied through clenched teeth, "but if I do have it I want the dieagnosis, so I can get procrit for anemia!" I hate having to talk to her. She never gives a damn what my problem is, she just wants me to let her get off the phone.

I could feel so much better, I just have to see my doctor face to face. Night, everyone, and thanks