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Old 04-01-2012, 13:51
JinnyJinxed
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My friend has been ill for a very long time now, and numerous tests have told the medical teams nothing. And she gets told, she is dying - but they don't know why...and that she is an 'anomily'. She has lots of symptoms, but apart from me saying from the outset, I believe it to be an Auto-Immune Disorder, nothing conclusive has been found.

She received a diagnosis of Lupus, but later was told she doesn't have it. She was then told she has Lymphoma, but then again, told she doesn't, and more recently she has been told she has Rheumatoid Arthritis, but there was nothing in her bloods, to indicate that she has the condition, but the Rheumatology Consultant, have started treatment for that anyway.

Amongst her symptoms are:
*Pain inside the bones (NOT the joints) which she describes as like ants eating the bones from the inside out. This is mainly located in the thigh and arm bones, but has recently moved to her shoulders breastbone and ribs
* Swelling all over her body in various large patches - but its not water retention and again, NOT based around joints. She sometimes can look like she has chewed on a few bees, and this gradually fades after a few days.
* Shakes
* Sweats
* Chills
* Fevers
* Loss of grip without warning on either side
* Anxiety
* Brain Fog
* Mouth and Throat Ulcers

Those are the main ones. She previously could achieve some activity and could with assistance get out the house, a few days a week.

So they now are treating her with the tablet, Methotrexate for Rheumatoid Arthritis. They started her on 15mg, on Thurs 31st October 2011, but she got so much worse so fast that they stopped her for 2 weeks, as they said her ALT (Liver tests) showed a dramatic decline. In that time her weight fell off visibly, and she had dreadful flu like symptoms, but without having flu, the sores in her mouth got worse, and the sweat would pour off her like she was in a rain storm. So I gave her electrolytes in her drinks, because the Doctors said she might be dehydrated and to 'give it a whirl'. Off the medication she started improving again.

But then she got a phone call saying to start again, because she might have had an underlying infection, but to take just 12.5mg, and they are working on putting her up to 20mg. Within hours of taking the drug she started showing signs of being really ill again. The problem is that it is making her so ill she is practically housebound and in a terrible condition, 6 days a week. She just about, with help, has enough strength to get in the food for the following days, mainly for her animals as she has a complete loss of appetite, but then in the evening she has to take the Vitamin B suppliment, and then the next morning, she takes the Metotrexate again, and about 3 hours later, she is so ill again, she can barely move.

The other day she was rushed to hospital by Ambulance, because she couldn't open her eyes, or barely support her head weight, her colour was gone, her lips were pale, and her skin was waxy. She was so ill, it was frightening - I thought we were going to lose her. The hospital did bloods, but they came back negative, her liver function was not normal, but not bad, and the hospital said because of the treatment, they can't really do anything for her. She was sent home 24hours later, having been given 2 pills for her pressure headache and nausea (she wasn't nauseaous), but still ill, but at least she didn't look at that three quarters dead stage.

I called the consultant, as instructed, and was shocked by the very rude response. I was told the medication wasn't at fault, and that they can only treat the Arthritis (which they told us she hadn't got), and under no circumstance must she stop the treatment at this time, and "by the way - she is under other consultants too, you know!", when no other Consultant has yet issued any treatments. Then the Consultant decided to have a go at us, because she has 3 hospital numbers (we only ever give out the one the consultant told us to use), and this issue was covered and presummed resolved by them ages ago, as is an admin error, and nothing to do with us. She was left in tears, I was left fuming, but tried to keep calm as I settled her. As the night crept on, she was getting worse again. I just feel so utterly helpless.

The hospital also told us to see her GP, because of the treatment, but when we did, the GP shrugged and said, it's probably the medication, but we'd have to speak to the Consultant. He agrees her condition, since the use of the medication, has deteriorated, and has sent a letter to the Consultant for us.

I'm sorry for the rant - I'm so frustrated that this treatment has made her so much worse so fast. The only good change has been, that the swelling hasn't happened since being on the treatment at all, and the bone pain in the main bone, isn't as dramatic, but it is now there all the time, when before she had short spells of relief. Which as this drug is an immuno suppressant, seems to me, clarify's that it is an Auto-Immune Disorder, but the cost of taking it to her quality of life, is so high and it's getting generally worse not better, despite only having been on it such a short length of time.

My question, I guess, is - has anyone any experience of Methotrexate? Does anyone know of any alternatives, as we were led to believe it was this or nothing?
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Old 04-01-2012, 14:20
stupidwheelie
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Old 04-01-2012, 14:53
jasvinyl
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I'm so sorry for your friend. I don't have any experience of that particular drug, so I can't comment on that. However, I do have some knowledge of another cytotoxic drug, and know that the side effects can indeed be severe, but (in our case) worth it in the long run.

I know this is the most obvious thing in the world to say, but gettiing a proper diagnosis is absolutely the top priority. Can I ask, when lymphoma was discussed, why was it dismissed? What tests were done, do you know? How many consultants does your friend have, and what are their specialisms? My apologies for perhaps being intrusive, and of course if you prefer not to answer that's fine.
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Old 04-01-2012, 15:40
fondantfancy
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This sounds a complete nightmare, I'm so sorry for your friend and you, it's also hard feeling like a helpless bystander.

My friend took Methotrexate for Fibromyalgia and it affected her liver and she was changed to Prednisone - of course that doesn't mean for sure that Prednisone would be a good choice for your friend but I find it hard to believe that Methotrexate is the only drug that can be tried.

Has she been tested for MS? (Just throwing that out there.)

And, of course, she may have more than one condition especially if she's got autoimmune problems.

I'd think she needs to see an expert but without a diagnosis that's going to be hard.

(My daughter was undiagnosed with a joint problem for 18 months because I had to find out about it myself and ignore my GP, two physiotherapists and a consultant orthopaedic surgeon - until I found an expert.)

All the best.
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Old 04-01-2012, 16:13
shellshock
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Sorry, this may be stating what you already know.

I`m on methotrexate for psoriatic arthritis, I take 15mg WEEKLY. Even people who take it for cancer at 30mg only take it once a week. You make it sound like you`re friend is taking it every day, which I think would be very dangerous. She should also be taking folic acid. Hope she improves, although without proper diagnosis... best of luck.
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Old 04-01-2012, 16:21
belfastbobby
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Sorry to hear of your friend. Methrotrexate is a first line drug for RA and was first introduced in the 70's and for many very ineffective.I suggest your friend is what they call "sero negative" which means she has all the symtoms but her bloods says she doesnt have it. Any idea what her ESR's are, if higher than 4 her inflamanion levels show definate RA. She should ask her consultant to put her on Arava maybe with a small steriod 10mg. If it persists which I suspect it will press her Consultant for a boi logistic treatment like Remicane or Entracept. They have very high success rates for controlling this terrible disease.

All the best hope this helps
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Old 04-01-2012, 16:27
Abbasolutely 40
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I have nothing at all helpful to add , but just wanted to give some support and hope you find a helpful reply and a good consultant
Would the the support group be able to answer your queries and help you find the right path

https://www.arthriticassociation.org.uk/
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Old 04-01-2012, 16:38
Money4oldRope
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Amongst her symptoms are:
*Pain inside the bones (NOT the joints) which she describes as like ants eating the bones from the inside out. This is mainly located in the thigh and arm bones, but has recently moved to her shoulders breastbone and ribs
* Swelling all over her body in various large patches - but its not water retention and again, NOT based around joints. She sometimes can look like she has chewed on a few bees, and this gradually fades after a few days.
* Shakes
* Sweats
* Chills
* Fevers
* Loss of grip without warning on either side.
Much of the above sounds familiar but my right arm seemed like someone was forcing a knitting needle (too large) up and down the main artery.

I don't suppose she has small red spots on her chest or scalp ?

So they now are treating her with the tablet, Methotrexate for Rheumatoid Arthritis.

She just about, with help, has enough strength to get in the food for the following days, mainly for her animals as she has a complete loss of appetite, but then in the evening she has to take the Vitamin B suppliment, and then the next morning, she takes the Metotrexate again, and about 3 hours later, she is so ill again, she can barely move.
I was diagnosed with Polmyositis (similiar but not the same as Lupos) Scleroderma (mixed connective tissue disorder) and Raynauds 17 years years ago.

1 of the drugs I was prescibed was Methotrexate but I was just left taking taking this and after about 3 years when it started to damage my lungs, it was stopped and about 7/8 months later I was prescribed Azathioprine.

Over the next 6/7 years my drugs intake was reduced until about 2005 when I was taking just 1 Azathioprene on alternate days but not for long.

One thing that I must amphasis is that Methotrexate and Azathioprene are powerful drugs and the good lady must have regular blood tests.

PS I have heard of GP's prescribing Methotrexate wrongly I understand ie 2 tablets or so a day whereas I took mine once in mid-week over 12 hours - 20:00 hrs. 8:00 next morning and 20:00 hrs. that evening.

I hope your lady gets well and very soon.
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Old 04-01-2012, 19:22
chocoholic100
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Im suprised the consultant takes phone calls and talks through medical information relating to her with you, many consultants dont have time to talk on the phone and normally dont discuss anything with non family members, he sounds very nice
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Old 04-01-2012, 19:52
Pandy65
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I do not know what your friends condition is, but for the past yr (with marginal only success) I have been on Methotrexate for Rheumatoid Arthritis. Whether Sero-negative or Sero-positive (either you dont or do, respectively have symptoms in your blood of Rheumatism, as it is not Osteo (bone) arthritis it is deigned Rheumatoid Arthritis and generally treated the same way all the time. That is to say, so many milligrams of Methotrexate per week - and like a previous poster has said, generally this is taken at whatever milligram PER WEEK - and a further dose the next day of Folic Acid as Methotrexate takes Folic Acid out of the body. This is NOT a daily drug. Its taken once a week on the same day.
Its often backed up, especially initially either by Prednisolone (steroid) tablets and/or depo provera (injection) of same, to stave off the worst effects quickly. The idea is (after a year already I am at a loss myself to understand this one) that you no longer need the Prednisolone once the Methotrexate is working (har!)
Methotrexate is toxic to the liver as is alcohol and as is Paracetamol. Monthly Blood Tests whilst on Methotrexate are normal, is your friend having these? If her liver function is as you say, being affected, why are they continuing Methotrexate? (because its cheaper than alternatives???) I would strongly suggest you contact another doctor/consultant and insist on a 2nd opinion and get that 2nd opinion to include 2nd opinion results of tests done thus far. There is something not right here, by a long way. If you get no joy mouthing off at hospital or GP/Surgey then go direct to Primary Care - youll find their number in your phone book/online and make sure you let them know you are making a complaint.
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Old 04-01-2012, 20:06
MartinPickering
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to get in the food for the following days, mainly for her animals
What animals has she? Maybe this is an allergic reaction. Can she get away from contact with these animals for a week? Preferably away from the house and all animals.

Does she have a healthy diet?
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Old 04-01-2012, 20:11
Pandy65
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What animals has she? Maybe this is an allergic reaction. Can she get away from contact with these animals for a week? Preferably away from the house and all animals.

Does she have a healthy diet?
Thats a good point - it could be an allergy, especially with odd swellings. I love and adore tomatoes, but they make my lip swell if I get so much as a drop of juiice on them.
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Old 04-01-2012, 20:35
Croctacus
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I'm pretty sure on that drug patients should be having regular blood tests about every 6 weeks or so....not sure where is being monitored but i know of a couple of patients at our surgery on it that have very regular tests.
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Old 04-01-2012, 20:47
shmisk
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i get the ant like bone pain - I have fibromyalgia.

i second the person saying she may have more then one condition

also how old is she?
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Old 04-01-2012, 21:04
Money4oldRope
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My friend has been ill for a very long time now, and numerous tests have told the medical teams nothing. And she gets told, she is dying - but they don't know why...and that she is an 'anomily'. She has lots of symptoms, but apart from me saying from the outset, I believe it to be an Auto-Immune Disorder, nothing conclusive has been found.

She received a diagnosis of Lupus, but later was told she doesn't have it. She was then told she has Lymphoma, but then again, told she doesn't, and more recently she has been told she has Rheumatoid Arthritis,

Amongst her symptoms are:
*Pain inside the bones (NOT the joints) which she describes as like ants eating the bones from the inside out. This is mainly located in the thigh and arm bones, but has recently moved to her shoulders breastbone and ribs
* Swelling all over her body in various large patches - but its not water retention and again, NOT based around joints. She sometimes can look like she has chewed on a few bees, and this gradually fades after a few days.
* Shakes
* Sweats
* Chills
* Fevers
* Loss of grip without warning on either side
* Anxiety
* Brain Fog
* Mouth and Throat Ulcers

In that time her weight fell off visibly, and she had dreadful flu like symptoms, but without having flu, the sores in her mouth got worse, and the sweat would pour off her like she was in a rain storm.

Or barely support her head weight, her colour was gone, her lips were pale, and her skin was waxy. She was so ill, it was frightening - I thought we were going to lose her..

But it is now there all the time, when before she had short spells of relief. Which as this drug is an immuno suppressant, seems to me, clarify's that it is an Auto-Immune Disorder,
Can I ask a few questions ?

Has she suffered very slight alopecia ?

Does she have problems swallowing - like food can stick at her esophagus.

Does she have problems lifting objects - as though they weigh 5/7 times heavier than the norm - weak muscles.

Any rash or spots on chest or scalp.

Greasy palms and fingers.

She has had dramatic weight loss - how much ?

How long has she had this condition ?

I am NOT MEDICALLY QUALIFIED but from the symptoms above and maybe the answers I have fair/good idea what this may be.
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Old 04-01-2012, 21:07
MsWalker
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I'm pretty sure on that drug patients should be having regular blood tests about every 6 weeks or so....not sure where is being monitored but i know of a couple of patients at our surgery on it that have very regular tests.
I take MTX, and have monthly blood tests.
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Old 04-01-2012, 21:09
Meanbugger
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If her blood levels are being severely affected by the Methotrexate then she really should not be taking it as it can cause some damage, especially if her neutrophil count is low. There are other drugs which can be used to treat Rheumatoid Arthritis and sometimes they are used in conjunction with the Methotrexate. They are most commonly Sulfasalazine, Leflunomide or Azathioprine.
Is she having 2 weekly or weekly blood tests because if she is not then she should be.
I work in a GP surgery and am responsible for making sure patients on these drugs have the appropriate blood testing so I am far from being an expert but what you are describing is generally not what you would expect a consultant to do or say considering the nature of this drug.
Just to add I have read from your post that the person is taking this more than once a week because normally it is only a weekly dose followed by a Folic Acid tablet a few days later so what dose is she on weekly?
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Old 04-01-2012, 21:14
Pandy65
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If her blood levels are being severely affected by the Methotrexate then she really should not be taking it as it can cause some damage, especially if her neutrophil count is low. There are other drugs which can be used to treat Rheumatoid Arthritis and sometimes they are used in conjunction with the Methotrexate. They are most commonly Sulfasalazine, Leflunomide or Azathioprine.
Is she having 2 weekly or weekly blood tests because if she is not then she should be.
I work in a GP surgery and am responsible for making sure patients on these drugs have the appropriate blood testing so I am far from being an expert but what you are describing is generally not what you would expect a consultant to do or say considering the nature of this drug.
Just to add I have read from your post that the person is taking this more than once a week because normally it is only a weekly dose followed by a Folic Acid tablet a few days later so what dose is she on weekly?
this^ as someone who takes Methotrexate weekly followed by dose of Folic Acid and monthly bloodtests
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Old 04-01-2012, 21:20
sonyaanne1
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I have sero negative (doesn't show in my blood) rheumatoid arthritis since age of 5 (now 43) and fibromyalgia. Have been tried on methotrexate tablets and also injection form many times and consultants finally agreed I could not tolerate it even in a low dose. I felt constantly sick and my aches and pains were worse than without medication. Due to my intolerance to medication (and I have tried them all) I now have pain relief only. Methotrexate in its lowest form is usually (in my experience) 10mg per week and bloods taken every 6 weeks (again in my experience).

My sister in law and a neighbour have Sarcidosis, which can be confused with RA as can many other conditions.

With a sero negative count it can be hard to find a consultant that takes an interest in your condition. I was lucky that after 30 odd years I finally did.
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Old 04-01-2012, 21:25
sonyaanne1
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Can I ask a few questions ?

Has she suffered very slight alopecia ?

Does she have problems swallowing - like food can stick at her esophagus.

Does she have problems lifting objects - as though they weigh 5/7 times heavier than the norm - weak muscles.

Any rash or spots on chest or scalp.

Greasy palms and fingers.



She has had dramatic weight loss - how much ?

How long has she had this condition ?

I am NOT MEDICALLY QUALIFIED but from the symptoms above and maybe the answers I have fair/good idea what this may be.
Are you thinking Thyroid or is that just me
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Old 04-01-2012, 22:15
Pandy65
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Are you thinking Thyroid or is that just me
Thyroid only really have exp of over-active - stary popping eyes, and weight gain.
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Old 04-01-2012, 23:30
mazzy50
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Hi OP

I don't take methotrexate but do advise on prescribing in my day job.

Just to confirm what others have said. Methotrexate is taken WEEKLY not daily - your post sounds as if your friend might be taking the dose daily which is not in line with any treatment guides for any auto-immune conditions that I am aware of (or indeed any other condition - the absolute weekly maximum is usually no more than 25mg and it is taken as a single dose on the same day each week)

I would have thought the first thing the hospital should check for would be signs of methotrexate overdose ot toxicity - did they say anything about it?

Also, mouth ulcers are a well known side effect and can be ameliorated by the folic acid which some other FMs have mentioned. There are varying ways to take folic acid - either a single dose the day after the methotrexate or on six days a week (every day except the day that nethotrexate is taken). Your friend should also be having regular blood tests to monitor her blood count and her renal and liver function - these should be quite frequent at these early stages whilst they are finding the correct dose for her.

I think patients are supposed to be provided with a card which clearly states what their weekly dose is these days - this measure was introduced because there had been a number of incidents of patients having their dose prescribed daily instead of weekly and being very poorly as a result.

Please feel free to PM if you wish.
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Old 05-01-2012, 10:43
jasvinyl
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OP, if you can, would you please come back to the thread to reply? Thanks.
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Old 05-01-2012, 11:11
Beeper
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My heart goes out to your friend.



I was on methotrexate for psoriatic arthritis, first by injection for the first 2 months then tablet form for the next 4 months, but I only had it weekly. As it is a drug that can affect your liver you need to constantly have blood tests, I was tested fortnightly. After 6 months I could no longer stand the vile side effects that MTX was having on my body, especially the hair loss and the constant sickness. I ceased my treatment and tried accupunture, I had 4 sessions in total and that was getting on for 5 years ago and so far "touch wood" have been reletivly pain free, it sure beats all the cocktail of drugs that I used to have to take to manage my arthritis. I know it's not for every-one but it's an alternative and your friend may benefit.
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Old 05-01-2012, 12:13
JinnyJinxed
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Sorry for taking so long to come back to the thread. I had to go help my friend.

I spoke ot her around 6 o'clock and she sounded awful. I dashed over there, to find her barely mobile, - she was walking but so slowly, and bent half over, she has a tanned complexion but was really pale, her eyes were sunken in, and her face puffy, her lips dry and pale, and she was very very cold, and complaining about being unable to feel her fingers and her lips. I told her Im calling an ambulance again. She had at that point been vomitting and having explosive diarrheoa for an hour.

I actually feel very guilty because I feel I should have done more, but as she was protesting so much about not calling the ambulance again, I decided to call her emergency doctor instead, I couldn't just leave her without a medical check. Despite me wanting to call the ambulance. Her son wasn't helping in telling her and me, that it was pointless as they didn't really do anything the previous night. The Doctor came very quickly and said that it was most likely the drug, gave her rehydrating powders, told me to make her drink a lot of water, keep her wrapped up, and gave her a drug to stop her being sick, and then said to see the GP today, which we are doing later.

She did look brighter, but sleepy, when I left her cuddled up in bed with a hot water bottle. But I am not happy with this treatment.

I'm going to run through the posts and reply.

Oh and I'm sorry about the confusion - she is taking the Folic Acid on Sunday - and the Methotrexate on Monday night as instructed. But she starts getting very ill again a short while after taking it, to the point of interrupted sleep. She's just about functionable on Sunday but then it all carries over into the next week . She was told not to eat anything with Potatoes, but that was the only thing. She has weekly blood tests at the hospital where they are prescribing this drug, and the consultant we talk to - is a telephone number they gave us to call, was printed in their booklet they fill out. You leave a message and they call you back within 4 hours. But the person calling us back is the one we see. And as for why they discuss it with me.... its because I help her out in a type of carer way, handling a lot of her affairs. Her adult son has his own life, and she lives alone, and has few other friends locally, so I am on her Doctor's records, and just about everywhere else, to help her handle things like paperwork and be with her for her medical matters. If I can't help her because of my own limitations then I have more people around me that I can ask for help than she does.
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