Has anyone had difficulty getting help, because the doctor is concerned about putting you on medication due to age and side effects?

[cruznlcsw]

Here in the States people are sue happy, and my rheumatologist appears fearful that if I have severe side effects he will get sued! So now I have to wait yet another month to see if I am going to get any help even though I have had four positive P-Anca tests in six years including MPO. I am just getting worse, and becoming exhausted as well. I feel like giving up.

[tmd74]

Hi I too live in the states I was diagnosed with h.u.v.s in 2010 and I've had trouble getting help from drs because they don't know anything about it I have bad side affects from my med I take imuran if youdont mind me asking where are you from?

[cruznlcsw in reply to tmd74]

Hi, nice to meet you! I live in California. Boy do I feel alone! My poor daughter is trying to help me, but she has high functioning autism, and is language impaired. I don't think they take her seriously unfortunately. My son state side is no help. I have another son overseas. So here I am floundering about. I tried to tell the doctor at Stanford yesterday that I was beginning to have issues with my heart. He didn't even reply, because he was trying to write. I also fell yesterday, and I don't even know why. If I had support maybe I would get better care.

[PMRpro]

It isn't uncommon for patients with the vasculitis I have (polymyalgia rheumatica) to find some doctors trying to rush them off prednisolone which is the only way of managing the symptoms with dire warnings of long term side effects (osteoporosis, diabetes, raised cholesterol and so on) and all that does is the symptoms return. The choice is risk the side effects (which you may not have or you may only have mild problems) or have a poor quality of life and be at an increased risk of going on to develop giant cell arteritis which includes a high risk of going blind and both leave you at risk of blood vessel damage. So in some ways it is a rock and a hard place situation.

But in the UK there is far less likelihood of someone trying a big claim because of long term side effects - people do sue where there has been major medical negligence. And NOT treating is, in that sense, far worse. After all, if the long term side effects are explained properly and you still choose to take the medication - where's the problem?

My husband had cancer, he was less than 6 weeks from death untreated, one of the drugs used was cisplatin, it can make you go deaf - it did. But, as he said, if the choice is dead or deaf there isn't a choice.

Is it because of fear - or is it because he isn't sure what you have?

[cruznlcsw in reply to PMRpro]

I can't take prednisone because of what it does to my heart and I am already diabetic due to another medication. The doctor said if he confirms I gave CNS vasculitis then he would HAVE to treat with prednisone and the other med that I can't spell. My neurologist said I should try methotrexate. He does think it is in my brain. I am so at a loss.

[PMRpro in reply to cruznlcsw]

In any illness requiring medications the doctors have to weigh up the advantages and disadvantages: Is using this medication going to benefit the patient more than it is going to harm them? It is a very difficult decision to give the normal treatment for the illness a patient has if it is going to make any problems they have even worse and possibly make them so ill they don't have an quality of life.

From what you have said now I think you are maybe being unjust at thinking the doctor is hesitating because he thinks he might be sued. He is probably waiting to find out if he has any other options that may avoid possibly making you very ill. If he assumed it were illness "X" and treated it as such when it was really illness "Y" that needed a different treatment he might make you worse.

I do understand how difficult it is to wait, especially when you feel so ill, but you must try to be patient. The diabetes is less of a problem - you can treat it more aggressively - but if pred affects your heart that is a very different matter.

I do hope you get some better news soon.

[cruznlcsw in reply to PMRpro]

Six months ago I was working as a clinical social worker/psychotherapist in diabetes loving my job and my patients. Then, on May 3rd I had a pneumothorax and then surgery, because this was the third time I had a pneumothorax. Two more hospitalizations later, and I went back to work. I couldn't understand why I could no longer walk without my cane at work, and I didn't feel well. This was not something new, because I had dealt with something that was affecting my nerves, etc. since my thirties. I tried to get help to no avail, and I realized if I didn't just push through the pain, and memory loss I would not have a life. I obtained my Master's in Social Work, and then my license. I worked, pushing through the pain, and extreme sleepiness so that I could keep working. So now it is August 2013. My rheumatologist orders a biopsy. It was positive for Sjogren's. I found out he also tested me for the P-ANCA. I asked him about this since he had told me in 2008 that I was "all better." The vasculitis was caused by Minocycline, and I thought, "great!" Now the test was positive, but I didn't have any symptoms of vasculitis. He didn't ask me either, but I didn't think anything about it. Later I would learn it had never been negative. My thinking , organization, and memory began to be affected in October. I was referred to UCSF. They blew me off saying I had nothing wrong with me. I went back to the rheumatologist that I was referred to at Stanford. I found out he had not been told I was testing positive for not only Sjogren's, but Vasculitis. I have had four tests for P-ANCA and MPO. All positive. He wants to run yet another one, and also a test for Sjogren's. I pointed out that I had a biopsy. He lied, and said he didn't know that even though I had told him, and he looked it up as well. I have a lesion inside my kidney, my heart is acting up, I fell yesterday, and don't know why, and I could keep going, but I won't. I have no one to fight for me, to be my advocate like I was for so many people, but I really get why they loved what I did for them. So patients? There is no one that has been more patient that me.

[PMRpro in reply to cruznlcsw]

I am sorry - what a mess! Was it the Stanford rheumy that had ordered the biopsy? It does always annoy me when the patient realises the doctor hasn't bothered to read their notes to see what has already been done. But your system in the US does tend to result in duplicated testing because they often don't share results as it makes them more money doesn't it.

[cruznlcsw in reply to PMRpro]

My rheumy that referred me to Stanford didn't send my test results, but when he found out that my neurologist thought the vasculitis was in my brain he made copies of the test results to give to the doctor. And

the doctor at Stanford didn't check or ask me about test results. It's also strange how Stanford doctors think their tests are better. This sure isn't looking good for me!!

[magician]

I have been off prednisone for at least 5 years. Humira works well for me

[RareLily]

After two decades of dealing with a wild assortment of autoimmune complications, it's been my personal experience that most doctors have a "wait and see" approach. This can make the patient feel like a malingering hypochondriac, but truth is they simply don't know how to treat something they don't understand enough about. Additionally, the medications used to treat something like vasculitis are highly toxic, so for a person walking around with a milder case, it isn't justifiable in their book to open you up to a more dangerous set of problems if you are still " functioning. with a pulse". I recently had a doctor explain it to me this way after confirming I have CNS vasculitis.... "as long as you are not in a coma or paralyzed or unresponsive.... you are doing rather well. " You eventually learn to take it one day at a time to preserve your faith hope and sanity since not many people can relate to the stress of this.

[cruznlcsw in reply to RareLily]

Hi from a beautiful beach resort in California,

YOU SAID A MOUTHFUL IN THE LAST SENTENCE!! My neurologist believes I have CNS vasculitis, but the rheumy I have doesn't want to confirm it, because he says if he does then I would HAVE to take the chemo and prednisone. My neurologist wants me on Methotrexate to begin with, and does not want me to have a test for the CNS vasculitis. My brain will turn to jello before I get any help. I really appreciated your response, because I am becoming more and more short with people, and I feel badly about this, but I have so little support right now. I fell this week, and I can't get any shots in my back or help with my knee, because they say it would be too dangerous because of the vasculitis. I might as well sit on a stool and go around and around. It would be easier on me in the long run. Also, my heart is being affected. So you are right about how doctors are with this disease. I really appreciate your response hope to keep in touch. Gillian (with a hard G

[RareLily]

Greetings from New York! I have an aunt from Santa Cruz, CA (just a guess from your screenname, lol). I also test positive for Sjogrens, Anti Jo-1, and occasionally P-ANCA. What kind of shots won't they give you because of vasculitis? Cortisone injections are usually what is routinely given, and that is a form of steroid like Prednisone (which IS the treatment for vasculitis. So you aren't on any kind of treatment now?

[cruznlcsw in reply to RareLily]

Hi RareLily, You guessed right. When I first went to the rheumy at Stanford he said he wanted to find out right away if the vasculitis was in my brain. My neurologist says yes. Then he gave me a list of meds to look up to see if I wanted to take one of them or not. Now he is saying he doesn't think I have vasculitis. I pointed out that I have had four P-ANCA's, five MPO's, and now one other test is positive. I am getting really confused, and dismayed, because I continue to worsen. I emailed this doctor and told him I wanted a second opinion. I have not heard back yet. I am going to call tomorrow, though. This is certainly exhausting. I still think this has to do with the minocycline my doctor had me on for my skin. I have been told this med is what caused the positive tests for vasculitis clear back in 2008.