I am so lost right now I am in an acute state and the doctor wants to put me in the hospital but I can not go a mom of 5 with no family or close friends in this country so I sticking it out at home. MTX pills are not working so I am on the shot 20mgs once a week doesnt sound so bad but I have a huge phobia when it comes to needles heart racing painc attcks at just the thought. Take blood and i am nauseas the whole day or worse i am not nauseas because I threw up on the poor nurse who took it =/
Yes I know I have 5 children and needles do not hurt that bad but with each baby I was the woman screaming I can have this baby but if get near me with that IV im going to stab you with it instead! Worst of all they gave me the shots to give myself I normally take my mtx on Friday well Friday came and went and then Saturday and I was shaking and crying on Sunday as my husband gave me the shot poor guy took half an hour of calming me down before he could even get near me with the just the wipe to clean the area when he got out the needle I cried threw up and cried so more as he apologized a million times and gave me the shot...This is not going to work I can not do this again next week and I am almost to scared to tell the doctor
Not to mention that I have lost my sense of taste and feel like I have got metal in my mouth I am guessing this is a side effect from one of the other meds but which one I do not know ...Sulfasalazine? Prednisolon? Omeprezol? Ibuflam? anyone have a clue cause which ever is causing it I have got to change this is awful. Last nigh cooked hamburgers and then I couldnt eat them because to me they smelled completely wrong and tasted awful but to the kids and hubby they were awesome (sigh).
Princess Panic is not happy about any of this any I dont even know if I have the courage to tell the doctor because he is not one who actually believes in any form of mental illness or issues and thinks my panic attacks are drama even though hes recorded the tachycardias!
You have to tell your doctor. Open communication is the only way you will receive the most effective treatment, and find a way around this. One thought is to try and use a auto injector for your medication. I don't like them, but it may be the right thing for you. If I understand it correctly you don't see the needle till after the shot is given. Then you can also talk to your doctor about using valium or ativan to calm you down before the shot, and don't forget your breathing. You have to breathe deeply. It helps with panic attacks. If this doctor is not willing to help you then you need to find a new one. You need to be on the same page as your doctor, other wise you are just not going to receive the best treatment possible for you.
I hope that you can get better soon. Good luck and my prayers are with you.
Oh, Meli, I’m so sorry. You’ve got so much going on, and a busy family too. Is the a family support center or counselling center where you could get help coping with this? And you must tell your doc: he may be more understanding than you expect. Weird metallic taste? I’ve noticed it on mtx day.
This is so much to cope with. I wish I could just come over and give you a hand and a hug.
Things are just overwhelming you see I am american and living in Germany we have been here 11 years now but to be honest we have not adjusted and are not accepted. My husband is half German half American but even he is treated as an outsider in our community. We are moving to a new city soon one where there are more foreigners and wheelchair accessibility and I have hope of better days. In this town there isnt even an elevator at the local trainstation to get into the main building or up to the tracks and in our building there is not one either and we are on the top floor (4th).
I have been trapped for nearly 5 years indoor only going out on days i have to see a doctor and then staying out until my energy runs out just so I can do things with my children. Getting a diagnosis has taken 11 years and many times i have given up going in for treatment because no one took it seriously. Our town has about 2,000 people in it not much choices for care im praying that changes when we move.
I am going to call my internist again today as hes the one running the show for my care my rheumy has only seen me once this year and he does not have a free appointment until April 4th! The chain of cammand is I go in to see my internist and give him my list of complaints he eventually calls the rheumy and after I call repeatedly for a week and pester his secretairies into submission he calls me back with the med changes or tests I need to go have done. It took them a year to send me for my 3 phase bone scan and that is when they finally gave me my diagnosis. I have been on MTX for 5 weeks and had blood taken once about 3 weeks ago... I am certain that should be done more often from all i have read but with so few doctors in this city actually getting mine to have time has been a nightmare. I saw my dermy 9 months ago only to have his say until your rheumy and internist have set of a treatment plan and meds there is nothing I can do for you well months later my head is still covered in bloody patches and when I call which is often I hear we still have not gotten the information from your other doctors and until then we cant help.
I have no energy left my husband has been calling the doctors lately because after a round of hearing no ones done their job I end up in tears and frustrated. I would love to go back home to the US and we think about that more each day. Here we have insurance there we most likely would not... But here we have no family and no close friends so when I need to go into a hospital well I cant my husband has to work and there is no one to help with the kids. We have tons of family back in the US but in reality we are scared to go back because what happens if we cant find work? a home? insurance? ...overwhelmed to the max right now and really just want to cry.
Of course you feel overwhelmed and you want to cry: you are shouldering a lot. For some reason, I had the impression that you were in Germany on a military posting. That's why I mentioned a family support center. But living there independently is something completely different. I hope your move to the city brings you new opportunities and improved access to what you need (social, psychological and physical).
On a very bright note, I just happened across your latest pictures of your cutie. Tutu cute!
Seenie, don't know about the other drugs you are on, but prednisolone absolutely can provoke a metallic, bitter taste. It doesn't usually do it at lower doses, but it sure can do it. I used to receive high-dose IV infusions of a near-cousin to this drug called methylprednisolone for arthritis. The taste perversion was awful. It surely is not your imagination! It is listed in the comprehensive (not the short ones) lists of side effects for the drug. Google "prednisolone taste" and you will see hundreds of people talking about it on other forums.
You are going through a great deal right now. It isn't surprising you are feeling the stress of it all. I wish you the best and hope you are able to find some relief soon!
Are there any alternatives to prednisone?the taste makes me so ill (ughh) im currently on 20mgs a day bouncing up and down between 5 and 20 the last 6 weeks but i am showing no signs of improvement with any of the meds for some reason im actually feeling worse then ever but honestly i can handle the pain but the taste is another story lol it is making me nauseas and queezy i would love that to stop asap!
Yes, I sure did mean to address this to MamaMeli. Sorry about that, to both of you!
There are alternatives to prednisolone, many of which are also in the same group as prednisolone and would produce similar side effects, so there's not a lot of help there. I seemed to get wonderful relief from Kenalog (triamcinocolone) injections. I didn't get many side FX from that. Just felt great for months. And that's one of the problems with that drug from the rheumy's perspective. The longer-acting drugs hang around long enough to do damage. They remove calcium from your bones if you are on them long enough which leads to osteoporosis...Not sure of your age, but this will be a point they will want to know about (before or after menopause), IF you can even get them to talk to you about it. Often when we use a steroid, and then try to go off that steroid, we experience a "rebound" effect, where the skin psoriasis comes back stronger than ever. So it's tough to get Kenalog these days. I would pay for it---whatever they wanted. It helped me that much. But it doesn't seem to be doing the job for one of our members of this discussion board. I feel bad for her. I just knew Kenalog would be THE answer, but apparently it is not. Ask your rheumy if there would be any benefit to looking at 3-4 possible treatments and weigh the risks and benefits. You might stumble onto something that way that might be a good drug for you, I have no experience about the TNF blockers or the biologics to give an informed opinion. One of my problems is that I can't see through these 57 year old eyes and I'm too vein to wear my glasses. 8-) Right now I don't have a clue how I changed this font to this size. I am an absent-minded byrd! Anyhow, check with the rheumy. Cost/benefit is the way THEY judge drugs. So it shouldn't be a stretch to get them to participate in the conversation.
Good luck!! I hope you find a drug that will be more helpful for you, and maybe not as dangerous as another drug might be. Keep us posted...we'll be waiting to hear!
Thats the issue my rheumy ive only actually seen once ... ONCE! i see an internist who runs the show the rheumy is the only one in town i saw him in september and my next appointment is APRIL 4th... no joke he said if you need anything let the internist know and he can call me well its been 7 weeks neither of them is exchaning information as was promised the rheumy has seen no x rays/ 3 phase bone scan/ nothing of my 12 years of information from my orthopedic doctor because in the long quest to find out what i have all that was sent to the internist but the information gap works both ways the blood tests the rheumy did 7 weeks ago got to the internist office yesterday...they are across the street from each other and from the hospital they both work at! Ive been on methotrexate 7 weeks now and they upped me from pill to shot and raised the dose over phone calls and faxes to the pharmacy no one has seen me in weeks except the nurse they have only taken blood once to check my "levels" for the infection that has risen (yet again) and for my liver...feeling frustrated is not even the word and i dont even know where to look for help. I am so thankful for this site it keeps me sane lol You are all great!
Sorry I have not been on in a while I hit a real low and am in a very bad way emotionally and physically drained. I called the doctor and he took me off of the sulfasalazine and decided if I did not need it enough to suffer through the bad taste it left then i did not need it at all…this attitiude carried over into my fear of needles to which he said well you have arthritis you are going to have to learn to deal with them or suffer the consequences and he switched me back to the MTX pill form at the lower dose of 15mg and told me he will not write a stronger pain medication because of this… Mind you im only taking Ibuflam 800 2 times a day because i do NOT like or want pain meds I am a mother of 5 and need to be focused not drowsey (ARGHHH) The fear of needles i have is not about the pain of being stuck its the idea of something under my skin i know its weird its hrd to explain but this is not something i can just get over it is so extreme that over the years I have left hospitals against doctors orders to avoid getting shots or IVs. there is only the one rheumy in this town and he refuses to take a call or see me until my appointment which is April 4th all of my treatment and decisions for my medications is running though my Internist and I am ready to give up completely. I had so much hope when i found a doctor who really worked hard to find out what was wrong with me and now well now i wish he hadn’t because at least if i didnt know i could force myself to go on the way i have been for years. My husbands staying home full time which is okay his job is flexible and all online so he could literally work from anywhere there is internet but still this is not a good situation for any of us. Being trapped on the 4th floor in a wheel chair is starting to cause cabin fever too and i am overwhelmed by EVERYTHING all at once.
I am so sorry that stinks that you can't see the other doc until April. You would think they would try to work you in knowing you are in such need. I know it can be depressing but hang in there if you ever need to talk or vent vent you can email me. Sometimes it helps to get it out that is what we are here for .
I’m so sorry about your symptoms and problems. Have you tried Humira?
MamaMeli said:
Sorry I have not been on in a while I hit a real low and am in a very bad way emotionally and physically drained. I called the doctor and he took me off of the sulfasalazine and decided if I did not need it enough to suffer through the bad taste it left then i did not need it at all…this attitiude carried over into my fear of needles to which he said well you have arthritis you are going to have to learn to deal with them or suffer the consequences and he switched me back to the MTX pill form at the lower dose of 15mg and told me he will not write a stronger pain medication because of this… Mind you im only taking Ibuflam 800 2 times a day because i do NOT like or want pain meds I am a mother of 5 and need to be focused not drowsey (ARGHHH) The fear of needles i have is not about the pain of being stuck its the idea of something under my skin i know its weird its hrd to explain but this is not something i can just get over it is so extreme that over the years I have left hospitals against doctors orders to avoid getting shots or IVs. there is only the one rheumy in this town and he refuses to take a call or see me until my appointment which is April 4th all of my treatment and decisions for my medications is running though my Internist and I am ready to give up completely. I had so much hope when i found a doctor who really worked hard to find out what was wrong with me and now well now i wish he hadn’t because at least if i didnt know i could force myself to go on the way i have been for years. My husbands staying home full time which is okay his job is flexible and all online so he could literally work from anywhere there is internet but still this is not a good situation for any of us. Being trapped on the 4th floor in a wheel chair is starting to cause cabin fever too and i am overwhelmed by EVERYTHING all at once.