Methotrexate.

Primary dose: 6 tabs x 2.5mgs : (15mgs) EVERY MONDAY PM (2pm onwards)

accompanied by 3 DAYS LATER: Folic Acid 1 tab : 5mgs THURS.

4th DOSE : 28th August 2023

3rd DOSE : 21st August 2023

2nd DOSE : 14th August 202

1st DOSE 7th August 2023

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Unchanged issues. Acute Polymyositis. Peripheral Neuralgia with extensive nerve damage <30 to >40% loss of sensation. Myalgia AND extensive muscle damage / loss / wasting.  Dysphagia. Abnormal lesion (Gluteus Maximus) with subcutaneous damage AND currently awaiting results of ‘punch biopsy’ to ascertain if suspected malignancy is correct. Abnormal body temperature that causes the overall peripheral body temperature to be extremely COLD to the touch. Extreme Creatine Kinase levels . HMGCR Auto immune antibodies ?+ Necrotizing myopathy.
Extreme tiredness with inability at times to stay awake.. loss of concentration.
Various lumps, bumps and swellings. Capillary bleeding into the tissues especially around the ankles / lower limbs with swelling AND serious issues with cramp / spasms of the feet / lower limbs.

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18th August 2023

Urine : Trace blood, trace ketones.

BP : (latest first) 178/106/91  - 184/111/92

(Thurs 17th August 2023)  -160/89/106  -156/88/103  -  171/104/93

CK levels remain high at 446 - down on previous levels >1000 >11.000 >16000 >32000 Figures since JANUARY 2023 = thus still VERY high for over 7 months.

When a muscle breaks down, it releases creatinine phosphokinase (CPK), electrolytes and myoglobin into the blood. Myoglobin cannot be excreted through blood and remains deposited in capillaries of kidneys. This myoglobin deposited in kidneys is recognized as a toxin by white blood cells present in the blood.

WBC levels HIGH!! White blood cells aggregate and set up an inflammatory reaction within the kidneys capillaries in order to engulf and get rid of myoglobin from the kidneys; this eventually leading to infection and acute kidney injury (acute renal failure).
 

RBC count LOW : 4.47

Neutrophil levels 16.2 HIGH
Neutrophils are a type of white blood cell (leukocytes) that act as your immune system’s first line of defense. There are three types of white blood cells: granulocytes, lymphocytes and monocytes. Neutrophils are a subset of granulocytes, along with eosinophils and basophils cells. Together, your white blood cells protect your body from infection and injury.
Neutrophilia: Neutrophilia, also known as neutrophilic leukocytosis, occurs when your neutrophil count is too high, which is often the result of a bacterial infection. To combat the infection, immature neutrophils leave your bone marrow too soon and enter into your bloodstream.

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Wed 16th August 2023 :

Blood pressure : 158/93/105      -   161/97/108   -     178/105/91     -      176/109/94

The calf muscles - both legs, are giving me a lot of discomfort. Also the cramp in both legs can be VERY noticeable at times with tight spasms. Almost nauseating. Ongoing weakness is also continuing to be problematic; mobility is compromised  - problems with balance and co-ordination – I can find walking difficult  worsened with muscle WASTAGE / WEAKNESS but also stiffness and cramps. Add to that, the continuing loss of sensation in the hands and feet (peripheral neuropathy.)

Update re patch on hand: Some more white spots AND they appear to be ‘weeping’ .. slightly moist and ‘sticky’ to the touch. ? More pics coming up.

Of some concern : on the top of the RIGHT hand near the knuckles:

Patch appears Friday afternoon onwards.
IS NOT a BRUISE.. has little or no sensitivity to it. Definitely indicating cell damage to that area of skin. Pressing over the area with fingers etc does NOT alter the colour etc

The small area that has white semi glossy spots is also I suspect damaged skin cells.

There is also one other factor that ought to be taken into consideration. That hand was exposed to the UV / sunlight ????

The hand, fingers, knuckles etc have been SWOLLEN for about two weeks. (That applies to BOTH hands. )

Fri / Sat / Sun 11th -12th - 13th August 2023

Overall: Blood glucose OK, Urinalysis : Milky in colour?? ++Trace :Ketones, blood. I’m keeping a careful eye on the urine as I am more than aware of the colour but also when I empty the jar I collect the specimen in, the urine pours out slightly thick and opaque? No distinct smell. Could be of no real significance re ie mucus in the urine et

 BP :

Sun: 158/87/94   171/105/94

Sat: 160/88/94   152/88/98

Fri : 149/97/115 After walkabout re extra exercise etc about 1 mile.
Later EVENING : 188/107/89 Note pulse rate drops and blood pressure goes UP?

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Thursday 10th August :

PM (after mid day) short walk out and some necessary shopping done.. good mobility test.
Overall weakness in lower limbs is VERY evident.

Blood pressure:??? NOTE the early morning reading,,, (221) 171/121/91 ??!!

AFTER 1.30PM 132/84/116   -   161/87/115  5PM 151/91 /106 

10PM  163/93/99 Ramipril dose : 2 x 5mgs : 10mgs over 12 hours..

5am FRIDAY :  176/101/95    188/107/96  

Blood pressure monitor changed to NEW one... checked BOTH and BOTH gave almost identical readings..!!

Sunshine, body afterwards, cold, sweaty and some discomfort re overall body strength / responses re health and wellbeing,., definitely compromised. The LESION area remains an issue!

Changing to Ramipril 10mgs STAT daily dose 9am Friday 11th August ! Lets see if that makes any difference.

More to follow.

________________________________________________________________________PM

Stepped up the dosage on the Ramipril to a daily dose of 10mgs (24hrs +)

Today : 5mgs : 7am   Blood pressure this AM : (221) 171/121/91 The figure in ( brackets ) is when my monitor first displays the SYSTOLIC figure which in reality is probably closest to readings that occur when those at the hospital etc take my lblood pressure, the so called ‘white coat’ syndrome .. hmm     I am not pleased at the figure remaining this high.. I would say the Ramipril is having little or no real effect BUT
What I have tried to communicate re BLOOD PRESSURE is that it is NOT dependent on the so called NORMALS re the use of Ramipril etc to control blood pressure, my body has so many good bad and indifferent things going on ???

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Wed 9th August (+2 DAYS)

Urinalysis : Traces re Ketones / blood. Will monitor this carefully and any causes for concern seek some extra testing etc.

Ramipril : 5mgs : 7am                          Ramipril 5mgs : 7pm     Total 10mgs / 24 hrs.
Blood pressure : Since 5am : 199/109/92   7am : 184/108/98      12pm : 182/105/100   5pm 166/102/92    10pm 184/108/98  

ISSUES: Hands swollen / puffy, unpleasant tingling sensation - hot.
Left thigh area : painful. Legs overall: noticeable weakness. Coldness / numbness.
Raised acidity re gut / stomach etc Under control. No nausea.         
‘Lesion’ area remains unchanged re discomfort, pain, coldness etc  _______________________________________________________________

Tues 8th August (Day AFTER 1st dose) :

Overall no ‘side effects’ noted BUT it is less than 24 hours ! Diuresis was OK but far more than usual this morning re volume et Almost 1.5 litres output followed by less than 1 litre 2nd pee.. Bowels are OK -
Blood pressure remains an issue - 180/113/95   -  179/108/88

Urinalysis OK, BG 5.8mmlo/l   Calf muscles: Am noticing further weakness in lower limbs. Tiredness is also continuing to be a real problem, falling asleep for several hours ??

The ‘punch biopsy’ area has had the two stitches removed AND remains sore, cold, numb to the touch. Little real change in that area. As I have said, I am almost certain that the ‘lesion’ is malignant. However the results re the actual biopsy are not likely to be forthcoming without delays.

Monday 7th August 2023 :

Urinalysis / Diuresis: OK NO issues.  - Blood Glucose 6.1mmo;/l  - BP: 167/112/87     172/115/87   GUT: Level 5 HIGH re flatulence, gurgling, acidity. Will need to carefully monitor and keep acidity controlled. .

1st dose taken. METHOTREXATE
Primary dose: 6 tabs x 2.5mgs : (15mgs) EVERY MONDAY PM (2pm onwards)  accompanied by
3 DAYS LATER: Folic Acid 1 tab : 5mgs THURS.

BEFORE I took the first dose..

My body overall peripheral temperature is 96.7 with the usual cold sweat that accompanies it. My stomach has also been a little more proactive re some discomfort etc. I’m going to use the hot water bottle method and the use of a wolly hat to help re the coldness re my scalp. NOTE THIS IS BEFORE I took the first dose.
My hands are swollen and puffy with some stiffness of the joints present AND the ‘pins and needles’ sensation indicating poor blood circulation.
I will now monitor very carefully any possible side effects that follow over the next week. I am more than aware that the following applies in general..
Most side effects etc can occur from next day on. The medication itself can take from 6 to 8 weeks before any noticeable effects re any good, bad or indifference in its application. I will have to be VERY aware of any problems re micturition / diuresis. Daily clinistix testing. Colour and smell etc re the urine, any particulates etc Kidneys, kidney pain, discharges, gall bladder, gall stones, bladder discomfort and any abdominal pain, pancreas, LIVER related etc. Stomach issues such as nausea, vomiting, acid reflux etc DAILY testing re bloiod glucose levels as I need to remember the increased risks re diabetes etc

I need to make viewers aware that you CANNOT assume when it comes to me taking the METHOTREXATE that any previous usage of such medication where others are concerned applies to me. The ‘variables’ re my overall situation health wise are in some instances far more complex. The peripheral body temperature re the coldness, the NUMBNESS and 30-40% neuropathy apart from the ongoing underlying necrosis will I KNOW be delivering some good, bad and or shockingly indifferent results.

Blood pressure is another major issue that I am trying to resolve with little success, I have made the suggestion that I should look to using a ‘beta blocker’ and have approached my GP re re this and asked for a telephone consultation so this can be discussed, prescribed etc. GUESS WHAT?? Do I get a call from the GP ? NO - I get a non medical qualified receptionist who can offer me an appointment to see a nurse?? NOT talk with a GP or medical consultant ? Wasting more time when no doubt a quick ten minute GP talk and resolution et will suffice??
 

More to follow.