Hi Fellow Unfortunates, I am so disappointed. I've been feeling so much better as far as being fatigued, but I went to the hematologist today and he said my iron level has dropped back down to where it was when I felt so bad. He prescribed some 0 a month iron. I have good insurance, thank God. Now what? I have no bleeding anywhere...I've been checked from colon to elbow. I'm just dumbfounded. I just knew he would say things were looking better...carry on. But, he didn't. I still think the prednisone is doing it. It's hiding inside my blood vessels eating up all my iron like those nasty little toenail fungus guys on the commerical. I just know they are. Drooling, greedy, little creeps.
I've been having a terrible time with pain for 2 weeks, so my writing will be a little psycho today as it is from time to time. For the record, I'm not on anything as I write, it just seems as though I am.
I'm hanging in there,though, trying not to call the rheumy. I don't want to up the drug from hell. I'm doing 2 30' murals for a company and it's really been hard. I take darvocet to be able to work, and usually 4 days is my pattern for flares. I tried to go from 6mg to 5, but had to go back up. Does anyone have more trouble dropping the dosage when you get around 5 or 6 than you did at the higher levels?
If our doctors don't help us all soon, I think we should band together and harvest their organs while they are alive. Then, and then alone, will they truly understand our pain.
Just kidding! All they have is all they have. If research doesn't give them more knowledge they can't help us more, right? Nah, we should just go ahead and harvest their organs.
Everyone have a blessed day, and if you have no pain today, laugh... and if you do, laugh anyway. Thank God for laugher. Love to all of you.
Betsy,
Yes, I say harvest their organs now!! I wonder if there are any rheumatologists who also suffer from this insane disorder? I bet not. If they did, then certainly something would be done for us by now.
Your laughter is the very best medicine of all! Thank you from my heart. You are an inspiration. I was up early, as usual, this morning and read many of the old posts. Yours from a while ago was so concerning. What ever happened with the leukemia diagnosis? Did you white cell count return to a normal state? I feel so much for you! You even had to go through the dreaded colonoscopy!! My worst nightmare!! They certainly were checking you out all over. I guess, though, that shows a responsible doctor. You had asked if prednisone can cause leukemia. My mother had leukemia many years ago, and was given prednisone for partial treatment of the disease. I was concerned about other organ distruction some time ago regarding the steroids and asked my doctor. He said that it would not damage my liver or kidneys or cause cancer and it was used many times as a treatment for these same problems. This did relieve me alot. I am not meaning to whine all the time, it is simply that, as you well know, most of the time I feel that I am fighting a battle that no one has any answers for. You have my sincere best wishes and hope for a positive tomorrow. Susan M.
P.S. Does Darvocet help your pain? My doctor prescribed it for me, but it didn't touch the pain. I think I figured it out, though. Darvocet has tylenol in it, not aspirin. Aspirin would be a NSAID and fight the inflammation as well as the pain. Some one told me that Darvon has asprin in it. I think I will ask the doc about this. Maybe it would do better. Take good care!
Georgiana,
I am prednisone and Methatrexate. I started out on 15 mg of prednisone in December. Then in a couple weeks I went back and she started to reduce the prednisone and started me on the Methatrexate because that takes a while to build up in your body.
I am now on 10 mgs of prednisone and next week I go see her again. This would be the two month time on the Methatrexate. I suppose now she will keep reducing the prednisone. I hope so, from what I hear it is not good to be on it. I don't know how long would be on the Methatrexate then. I haven't been able to find out by reading just how long one is on that. I suppose until the blood tests tell them that the inflammation is down.
I have one of those bodies that like prednisone. My pain started going away within two hours and within 36 hours was gone. I have gained about 5 pounds this winter...but usually I do...and then work like crazy in the spring to get rid of it. My face has also not swollen up. And, I feel warm...I used to be always cold. Too bad it is not good for one.
If you remember, I am the one that also has pelvic pressure, when I to bed and when I wake up in the morning. Don't know if that has anything to do with PMR or not. I've been poked and prodded and they can't seem to come up with what it might be.
Neither of my parents had this, and I don't think my grandparents did. None of my aunts and uncles did either. My mom though had the same pain in her back around her sacroiliac joints. Maybe that is partly PMR, because I still have that even when on the prednisone and Methetrexate. Mary
Susan,Thanks for your kind comments. I can tell you are a kindred spirit. I'm sitting here honing my knife for the harvesting even as we speak. I don't know what happened to the leukemia. The GP said that. All the hematologist said is if the iron doesn't work, then we'll do infusions. I have read after that they do bone marrow biopsies to see why you're not making iron, but he hasn't mentioned it yet. Yes, the darvocet takes the edge off so I can work. That's all it does. I'm having a terrible time with pain for the past few weeks. The time length is out of the norm for me. I believe prednisone does just generally age your body real fast. Hair, skin, bones, everything. But most of us absolutely can't stand the pain. I don't think they are thouroughly checking me out as much as they are handing me from one specialist to another within their clinic so they all can make a really good living and pay for the newest equipment. That seems to be the goal. When I had the colonoscopy the Fuji man was there teaching them to use a new imaging device. He was real nice, but I wasn't crazy about him being introduced to my colon before he even knew my face. It was just a social thing. I signed a paper stating that med students could be present, but I just don't remember approving the Fuji guy. If you will, tell me about leukemia and how it affected your mother. Thanks, girlfriend and try to have a half decent day. Love
Georgianna, No one in my family ever had PMR. My grandmother and some aunts had RA, but no one ever was so incapacitated they couldn't get out of bed or go to work. I just wonder PMR isn't a newer thing. And it may not even be arthritis. There is still the inflamed blood vessel thing that is popular too.
I didn't quite understand what the Methatrexate does. Do you only take it for a couple of months? Why do you take both prednisone and Methatrexate?
I could better live with prednisone if it just didn't mess with my face. It just takes on a whole new look, like someone I don't even know. Like, yesterday morning I was sittling at the bar shaving like a trudk driver (not with foam, just a dry razor) before I put my makeup on. My soninlaw asked if I needed anything from the store. I told him to bring me a pack of Bull Durham. It's just a vanity thing. All my life I've had a nice, pleasant face and now I look like a cross between a SharPei and an aging panda. Not really, now that I'm down to 6mg, but I did before. I have a little roundness and some swelling under the eyes, but it gets less everytime I drop a mg. I can't seem to get to 5. I've been trying for two weeks.
I remember about the pelvic pain. I would think it is very likely PMR since it's in the hip area. That's the favorite stomping grounds of PMR, neck and shoulders, and hips. Thanks for the post. Always great to chat with you. Love
Betsy,Betsy,
I'm so sorry to hear about all of your current difficulties with this nasty disease process. I must say, however, that your humor this morning just about caused me to wet my pants. It was the best laugh I've had in years! That's what's so wonderful about this disease bonding. We understand each other completely and not only do we sympathize but we are able to empathize , as well. Thank you for such a wonderfully healthy laugh to start my day. I, too, see a different face than the one I expect to see every time I look in the mirror. It's not that I am really so vain, as I don't think I have ever really been anything to brag about, but it simply is not me. I don't know who this person is that looks back at me, but she is certainly not looking real sharp. Definitely not sharp....very rounded. I loved the sharPei and aging panda comparison. I find an old panda, complete with the dark circles around my eyes every morning. Either an old panda or an obese raccoon. This isn't a good look. My torso is also recently getting remarkably bigger. I am only on 4mgs now and fighting to stay at this level. I have reached a point where I am almost afraid to go to my rheumatologist or have another crp done, for fear that he will once agasin up my dose of this hideous and monster=making medicine. I do not ever feel well, at this dosage, but I am really hoping that my sed rate is okay enough to be mainained on it for a while. I tried to wean myhself off a couple times. The first time I was down to 1mg and woke up nearly blind, and the second time, is when I found this wonderful support group, who encouraged me not to self treat this disease. I am very grateful. I was fine for about five days, but then pmr recurred with such a vengeance, that I was once again unable to turn over in bed or get to the bathroom by myself. Now I'm tolerably sore, and I do understand your times of day fluctuations. I am fair to okay every day until about 2p.m.; then I become so stiff that moving becomes difficult. 800 mgs. of ibuprophen keeps me going for the rest of the afternoon, but I really do feel like the tin woodsman in need of an oil can. How about the hair on your legs? Did it disapear like mine did? It's almost like this prednisone has a life of its own and ideas about changing your body to suit its own insanity. The hair from my legs rearranged itself on my upperlip, but as yet hasn't come back on my legs. I give up! At least its not as much to shave.;) ....and that bulldurham sounds pretty good! How about we go out for a malt liquor in a dirty glass...I'll buy!
Mary, (starbright 57) has shared an interesting website with us.
http://www.medic8.com/healthguide/articles/polymyalgiarheuma tica.html
It talks about combining medications and gives some more insight to pmr. I hope you are feeling better soon. I am certain that your attitude is good. This should really and truly help you. I know that you have given me quite a lift today. Thank you. I will be sending best thoughts your way. Love to all of you...Susan M.
My husband is on Metho. x four pills once a week.Susan,If we go out we'll have to wear our bud light tank tops and cut offs. You made me laugh today! You are funny yourself. This could be a dangerous duo. The obese racoon and disease bonding I thought were really good.
I have those dark circles too. What I told you about the shaving before I put on my makeup was true, as was the Bull Durham conversation. No, there' no hair on my legs. Just a soft,fuzzy beard and some pig bristles growing out my nose. Last week I had three hairs on my head, but this week I only have two, so I parted it down the middle. I'm planning a ponytail for next week when I only have one. It's pathetic.
I'll bet people reading this think we are two ugly dogs. LOL
I had my stress test today and I failed miserably. I only lasted 2 minutes! Me, the one that climbs scaffolding and stuff all the time. How can that be? She said part was because they've been giving me too much thyroid med., but some because I'm out of shape. I guess this means I'll have to go to the gym now. I do so hate when my heart beats fast. Maybe they will have a machine I can like push with one finger or something. My heart pounded for an hour after that stress test. It was awful.
Ohmygosh, you woke up nearly blind? Did you just stop when you were taking a high dose or what? I'm just too afraid to mess with it. I feel better today than I have in about 8 days so maybe I'll try to go to 5 mg again in a day or two. I was so close to caving and going back to a higher dose. Thank you Jesus.
Night, girlfreind. It's always fun. We'll battle wits again soon, I'm sure
Hi KewaneeBetsy,
Please tell me if I have this right. You are anemic so your doctors are passing you around trying to find out why. You have been given the colonoscopy to see if you were losing blood through your colon and all are concerned about the possibility of leukemia because of your low red count and a high white count? Which white cells are high? I have read various postings here about pernicious anemia. This is where the B12 comes in to correct this condition. My sister-in-law has this condition and literally passes out from time to time if she doesn't get her regular B12 shot. Also, something just to ponder about....Do you ever work with lead in your art? Maybe stained glass or some other medium? Lead can cause a "stipling" of the red blood cells. This gives them a squished shape which can't carry enough oxygen for your body. Just a crazy thought. An ex sister-in-law of mine had this, and became very sick with it. Also, do you have a high platet count or a low? The way I understand it, a low platet count is the norm while taking steroids. This causes us to bleed more easily and form those hideous bruises and blood blisters under the skin. Just another side effect of steroids. Please forgive my questions, but there are so many posts and I am getting really confused.
I don't know about the bud-lite tank tops. I'm thinking maybe strapless tube tops with a blazenly imprinted "Guiness Stout" on the front. Heck, maybe we could even get our buffalo humps tattooed. I say, if we are going to be ugly dogs then we ought to go all out and be the ugliest hounds around...strength of character, that's what this is about! I say flaunt it!
By the way...You are wonderful and I so much enjoy your humor that I keep it in my head all the time, and it makes me feel so much better! Thank you for being there for all of us. There is no doubt that we are all here for you! You sparkle like a diamond! Susan M.
Thank you Susan M. You are too, too kind. I laughed my head about getting our buffalo humps tatooed. My daughter laughed too. The tube tops would show them off beautifully.
My blood count was low iron, high white,(because of prednisone most likely) and out of sight platelets.( a triad suggesting leukemia) Platlettes should 300 to 400 or something like that. Mine is always 750 and has been ever since this started. I am aware of the B12 thing you're talking about. You can be iron deficient or B12 deficient. I am iron deficient and my B12 is good, they say. Later tests also ruled out leukemia as far as they have told me.
No, I never work with lead that I know of. I use waterbased acrylic paint for the murals. Even the coating is waterbased and non toxic. Some jobs I do require a form from about products I use,stating anything toxic or hazerdous (like flamable etc.) so I'm pretty familiar with what's in everything.
I've researched everythng I can think of to try to see what doctors are thinking. I got the results from the stress test today. Nothing wrong with my heart. I think I am anemic and overmedicated on synthroid and that's it. No telling what it has cost to find two simple things that are wrong. I don't know why I'm not making iron, that puzzles me, but lots of people get anemic. I started walking yesterday because my stress test was so bad. Try to get in better shape. Well, let me know how you are doing. I always seem to be talking about me. Love