General Medical issues thread

[cove]

Yes you can get shingles multiple times. In the US the TV advertisement says one in three will get shingles.

 

[Pushka]

I can't have the shingles shot due to lupus meds.
FM - if your daughter isn't really sure why it's been suggested she goes on methotrexate then a second opinion isn't fluff but actually needed. Is she already in plaquenil? That's usually the starter along with steroi_s if a fast response is necessary while plaquenil kicks in.

 

[Flying mermaid]

I can't have the shingles shot due to lupus meds.
FM - if your daughter isn't really sure why it's been suggested she goes on methotrexate then a second opinion isn't fluff but actually needed. Is she already in plaquenil? That's usually the starter along with steroi_s if a fast response is necessary while plaquenil kicks in.

she is not on anything at the moment, which is why she wants to investigate a bit more. Basically she was identified with Reynauds, RF and ANA about 10 years ago and was seeing her Rheumatologist six monthly for around 5 years, without anything developing. Then her muscles and a nerve in her leg died and while no one seemed to know why, auto immune seemed implicated. CPK is constantly slightly elevated. 12 months ago her Rheumatologist put her on a 2 month course of steriods just to see if that had any effect on the CPK, but it didn't. So until now medication free. Localised Scleraderma can kill muscles, so it seems likely that that is what was the original problem. Some types can reoccur - (particularly Coup de Sabre, which she doesn't have), and I assume that is what her Rheumatologist is trying to treat. It would be really nice if Miss FM would go back to her and tell her that she made a mistake and they are not new lesions, but probably date from the muscle dying issues, but she is adamant she wants to just go and see the dermatologist and talk to him. I worry that if she lost muscles in her thigh in addition to the lower leg, then she would be crippled, so concerned at the delay, but on the other hand I sympathise with not wanting to take something she possibly doesn't need to.

is plaquenil used with Scleraderma? It seems more of a Lupus/RA thing?

 

[Pushka]

she is not on anything at the moment, which is why she wants to investigate a bit more. Basically she was identified with Reynauds, RF and ANA about 10 years ago and was seeing her Rheumatologist six monthly for around 5 years, without anything developing.....
is plaquenil used with Scleroderma? It seems more of a Lupus/RA thing?

Plaquenil is first line treatment for most auto immune systemic issues, except I think for Psoriasis. It takes at least 6 weeks to kick in (in my experience) which is why steroi_s are often prescribed if immediate relief is required and then these are generally tapered off once plaquenil kicks in unless you have a flare. I have had no side effects from Plaquenil and that is the usual experience. I reckon its a wonder drug. How can two tablets a day remove the concrete shoes I have been wearing?

Try get a Dermatologist who is familiar with auto immune issues - google their specialties. I had one who completely misdiagnosed me 6 years ago - had he been correct then I would have been on that treatment years ago. Then I found a fantastic one who diagnosed the discoid lupus, then livedo reticularis that comes with the blood clotting disorder. I knew I had seen this before but I had no idea whatsoever it was an important symptom. I've had it since childhood and I am way old now! I have raynaulds also - had it really badly last night when we were at an outside wedding when we were in the sun (naughty me, no hat) and then cold. Fingers were blanched white and freezing. I just never knew all these things were symptoms and I didnt put the jigsaw puzzle together until the blood clot that led to antiphospholipid diagnosis.

A couple of references for you from medical sites that discuss plaquenil and others for scleroderma. Not a Doctor but I do not think methotrexate should be the FIRST treatment tried without a second opinion.

Scleroderma | University of Maryland Medical Center

[h=2]Medications[/h]Doctors often treat localized scleroderma with moisturizers or steroi_ creams. Oral medications, such as minocycline (Minocin or Dynacin), may also be used to stop localized scleroderma from getting worse if it involves a large area of the body, such as an entire arm or leg.
Systemic scleroderma may be treated with medications that improve circulation, reduce heartburn, preserve kidney function, and control high blood pressure. Some medications a doctor may prescribe for scleroderma include:
Nonsteroidal anti-inflammatory drugs (NSAIDs): NSAIDs to relieve joint pain and inflammation.
Medications to promote better circulation: can help prevent high blood pressure and reduce symptoms of scleroderma. They include:

• Calcium channel blockers (CCBs)
• Angiotensin II receptor blockers
• Angiotensin-converting enzyme (ACE) inhibitors
• Alpha blockers
• Aspirin

Disease-modifying antirheumatic drugs (DMARDs): DMARDs slow the progression of the disease. They include:

• Hydroxychloroquinine (Plaquenil)
• Methotrexate (Rheumatrex)
• Sulfasalazine (Azulfidine)

Immunosuppressants: Suppress an overactive immune system. These drugs can have serious side effects including kidney damage and increased risk of infection. They include:

• Azathioprine (Imuran)
• Cyclophosphamide (Cytoxan)
• Cyclosporine (Neoral)

Antacids: To reduce heartburn when there is damage to the esophagus.



Scleroderma Treatment | Standard | Scleroderma Education Project
[h=3]Immunosuppressant / Disease Modifying Medications[/h]In addition to Scleroderma medications that are used to treat individual symptoms (these are covered below), a number of different medications used in the treatment of systemic Scleroderma patients are designed to interrupt the disease process in a variety of ways. Since systemic Scleroderma is considered an autoimmune disease, some of these drugs are designed to suppress the entire immune system, thereby (hopefully) reducing the disease level and slowing or stopping disease progression — for example, cyclophosphamide (Cytoxan). Others Scleroderma medications target specific aspects of the disease such as the mechanisms involved in skin fibrosis. An example of this would be imatinib mesylate (Gleevec). A third category involves medications that are used to “regulate” the immune system, such as hydroxychloroquine (Plaquenil).

 

[Flying mermaid]

Thanks for all that -going away to read. I think there is more awareness and understanding of auto-immune problems now. The Rheumatologist has recommended the dermatologist so I assume he is across these sorts of issues, but will investigate more. So glad your treatment has improved your quality of life!

She hopefully does not progress to systemic scleroderma which is much more serious. Raynauds is an indicator for progression, but her other ANA tests don't indicate. Her Rheumatologist seems fairly sure it is only localised scleroderma, but time will tell.

 

[JohnK]

Dad not well on weekend. Struggling to breath and wheezing sound from lungs. Went hospital and had him on oxygen. Spent a couple of nights there and out yesterday. Not sure the exact cause but could be related to asthma, the fluid in his lungs or even his heart condition. Feels better now.

The image in my mind was dad holding my daughter at airport on Monday afternoon. He told my wife to take good care of her. He misses his grand daughter a lot.

And for those who believe in coincidence dad was in the same bed in the ICU I was in when I had my heart attack in 2003. Mum had a strange feeling when she saw him there Monday night.

 

[Pushka]

Best wishes for your Dad JohnK. I guess the good omen in being in the same bed is that zoom forward you now are married with a daughter. So all 'positive' memories.

 

[whatmeworry]

Dad not well on weekend. Struggling to breath and wheezing sound from lungs. Went hospital and had him on oxygen. Spent a couple of nights there and out yesterday. Not sure the exact cause but could be related to asthma, the fluid in his lungs or even his heart condition. Feels better now.

The image in my mind was dad holding my daughter at airport on Monday afternoon. He told my wife to take good care of her. He misses his grand daughter a lot.

And for those who believe in coincidence dad was in the same bed in the ICU I was in when I had my heart attack in 2003. Mum had a strange feeling when she saw him there Monday night.

Could be thunderstorm asthma? Was pollen high in Sydney last week, is he allergic to pollen?

 

[JohnK]

Anyone (Pushka, John K), on using Methotrexate?

I was on Methotrexate for ~14 years. Mainly on 15mg/week. Rheumatologist prescribed for severe arthritis and to be honest it has helped.

Unfortunately long term use is not good and went off Methotrexate in February of this year. So far no signs of long term damage but liver function was high for a while.

Over the years I have been on Tigasson, Neotigasson, Cyclosporin, Humira, Infliximab and now Stellara. They all assist in some way but not a cure. Maybe one day....

 

[Flying mermaid]

I was on Methotrexate for ~14 years. Mainly on 15mg/week. Rheumatologist prescribed for severe arthritis and to be honest it has helped.

Unfortunately long term use is not good and went off Methotrexate in February of this year. So far no signs of long term damage but liver function was high for a while.

Over the years I have been on Tigasson, Neotigasson, Cyclosporin, Humira, Infliximab and now Stellara. They all assist in some way but not a cure. Maybe one day....

thanks - the dermatologist she saw today also prescribed Methotrexate so I guess she will be taking it. I have asked her to query how long they think she will take it for. No-one seems to know much about localised scleroderma. Prevalence is about 3 in 100,000 people. There seems to be no way of finding out whether it is active or not, or whether it has gone away.... So effectively she is taking Methotrexate "just in case", but if she doesn't and it is still active, then the consequences could be worse. Hopefully she won't have to take it as long as you did.

 

[Pushka]

Waiting in Rheumatologist office now. Running a bit late. Hope phone lasts while amusing myself. Niece was in same waiting room two hours earlier. Weird like that.

Good to have second confirmation FM. Dosage is low for auto immune. Would be good if they could assess 'activity' though so they could know when to stop it.

 

[Flying mermaid]

This is my concern now. No-one seems to be telling her anything, apart from "you have localised scleraderma". I have made a list of questions with her and she has phoned her Rheumatologist's receptionist and asked for them to be passed on and answered. I am pretty sure they must have decided to treat it, because her ck is raised, but it would have been nice to have been told..... Still considering going to Sydney - Canberra has some excellent doctors and some useless ones. I would put her Rheumatologist in the good basket, but at the end of the day we are a country town......

 

[love_the_life]

Dad not well on weekend. Struggling to breath and wheezing sound from lungs. Went hospital and had him on oxygen. Spent a couple of nights there and out yesterday. Not sure the exact cause but could be related to asthma, the fluid in his lungs or even his heart condition. Feels better now.

The image in my mind was dad holding my daughter at airport on Monday afternoon. He told my wife to take good care of her. He misses his grand daughter a lot.

And for those who believe in coincidence dad was in the same bed in the ICU I was in when I had my heart attack in 2003. Mum had a strange feeling when she saw him there Monday night.

Best wishes for your dad JohnK. It is a huge worry when these sorts of things happen. Hopefully things will be sorted although you may never find out the actual cause.

 

[Pushka]

Update. I love my rheumatologist. On first appointment she was somewhat reserved but extremely thorough. Today she was very relaxed and chatty, caring and very thorough. Another physical exam. I mentioned that she had seen my niece earlier that day and she knew exactly who I was talking about and wanted to know our relationship given the lack of research on family influences. (She is my brothers daughter). We have both consented to (limited) exchange of medical info as both niece and I are researchers and both psychology graduates - she has PhD. We both love the science of research.

She said my feet were puffy and I mentioned that I put a pillow under my feet at night time. She looked at me strangely and said that only two of her patients had ever told her that and those two patients she had seen today - my niece was the other one.

Anyways I have to have a guided ultrasound cortisone injection in my left hand due to tenosynovitis that first ouchy cortisone shot didn't fix. Will wait until after Christmas.

As far as the blood clotting disorder (APS) she has now labeled as an official diagnosis so it's now in the record and doesn't need testing again. She confirmed that meant ongoing coagulation because of the weird location of the dvt and that if it was in a calf she might have reconsidered. I haven't been able to get an answer on whether the dvt formed there, or in my brain and gravity dropped it down until it was stuck. She said no Doctor in their right mind would stop the anticoagulant despite the bleeding risk. (Stupid first Rheumatologist). Thankfully she said she would not put me on warfarin which is very restrictive. No alcohol for instance and diet restrictions plus very frequent blood tests.

She still thinks I have unusual presentation of psoriasis in scalp because it has spread and is more angry but weirdly it no longer bothers me. All auto immune so related.

So quite a good appointment and feel things are under control. Will see her again in 4 months - again same day as niece, just an hour later.

Just need to take out a loan to buy all the scripts. Thank god for PBS. Xarelto would normally be $400+ a month.

 

[love_the_life]

Waiting in Rheumatologist office now. Running a bit late. Hope phone lasts while amusing myself. Niece was in same waiting room two hours earlier. Weird like that.

Good to have second confirmation FM. Dosage is low for auto immune. Would be good if they could assess 'activity' though so they could know when to stop it.

Good luck with Dr Pushka

 

[Pushka]

This is my concern now. No-one seems to be telling her anything, apart from "you have localised scleraderma". I have made a list of questions with her and she has phoned her Rheumatologist's receptionist and asked for them to be passed on and answered. I am pretty sure they must have decided to treat it, because her ck is raised, but it would have been nice to have been told..... Still considering going to Sydney - Canberra has some excellent doctors and some useless ones. I would put her Rheumatologist in the good basket, but at the end of the day we are a country town......

FM - when my niece was put on methotrexate there was a clear plan of attack and blood markers in place. There must be something in her blood work that is leading to the treatment? Maybe a skin biopsy?

 

[love_the_life]

Good luck with Dr Pushka

Oops missed the update - must have been posting while I was typing

Sounds comparatively positive though.

 

[Pushka]

Oops missed the update - must have been posting while I was typing

Sounds comparatively positive though.

All as expected love_the_life. Its years like this that make me relieved that mum didn't have to worry about me. Would not have coped well.

I had to check the diary to make sure next appt wasn't during our trip on QM2.

 

[bosox76]

Just need to take out a loan to buy all the scripts. Thank god for PBS. Xarelto would normally be $400+ a month.

Sorry I may have missed part of the history but have you had recurrent DVT's or just the one? Xarelto is only PBS listed for initial treatment of a DVT or for recurrent clots or non-valvular AF. Thus if you're beyond 6 months from your DVT or haven't had further clots technically you don't qualify for PBS subsidisation. Now as stated I may well have missed a lot of vital info and if that's the case I apologise. However if it's the above case and PBS finds out then your rheumatologist technically becomes liable to pay the difference for the scripts that they've written :0

Btw it's great that you have such a great relationship with your doctor. That's extremely important.

 

[cove]

I had better guard my travel bag as it has Xarelto and Anginine on board. Now tell me Vytorin costs a bunch too.