General Medical issues thread

[Pushka]

Stellara. Injection every 12 weeks. I feel Humira was better with injections every 2 weeks but they said Stellara should assist with the Rheumatoid arthritis. It's ok although the change is not that noticeable if at all. In all fairness though I was on Humira and 15mg Methotrexate weekly so that would have been good combination.

I've gone from Humira to Inflixibab and now Ustikimibab (Stellara). Can't go back to Humira as the body may now have antibodies against it. Infliximab infusions every 6 weeks did not do anything for me at all. In fact got worse.

Not risking another change. Life is weird. I know these are only small issues in the grand scheme of things but still depressing trying to live with severe chronic pain.

Just googled that and infections are a risk. As they are with all immunosuppressants. I haven't been through a winter yet on mine.

Does RA run through your family?

Had to revisit the Dr last week to get a repeat of the blood thinners I am on. He had received the Rheumatologist report since the visit before Christmas. He prints it off and then reads it - its about 2 pages long. At the end he said that GP's send people to Rheumatologists when they can't make sense of the issues - aka weird. He said the specialist had described all my issues as the weirdest of the weird and that I had piqued her interest. Right. Given my niece is also a patient its pretty much a genetic thing here. But she too is described as atypical lupus. So I just think that there are auto immune systemic issues out there that simply have not been 'discovered' yet. APS for instance (my blood clotting disorder) was only 'discovered' in 1983 thereabouts.

The GP kept saying that I was lucky. Could simply have been walking down the street and dropped with a stroke. One of those - 'she was fit and healthy, exercised and had a sudden stroke'. I told him if I had a stroke then I did not want to be treated if there was a risk that I would be disabled and end up a complete drain on everyone. So he gave me the lecture that he had a 90 year old with a stroke who made a good recovery, Sigh.

I do have dreams I am having a stroke when I get one of my bad headaches. Which I get - these weird muddly heads. First thing I do when I rouse is to smile to see if my face muscles are working. Its linked to poor sleep as well.

I get raynauds now - ghostly white fingers - when I get the least bit cold. The air cond at the office was on high this morning and sure enough for the first time in months (due to heat) my fingers are all blanched. Its a another symptom of the lupus/APS thing.

 

[JohnK]

Does RA run through your family?

Yes and we've not had a lot of luck either but could have been worse.

Mum has ankylosing spondylitis and both sons inherited it. Dad also has osteoarthritis. I also have severe chronic sacroilitis and that's a bad one where the pain transfers up to neck. Actually my whole upper body gets sore. Ribs, chest, neck, shoulders. Struggle to lift arms.

And if that's not enough I have had severe tendinitis and bursitis in shoulder and elbow.

 

[Pushka]

Yes and we've not had a lot of luck either but could have been worse.

Mum has ankylosing spondylitis and both sons inherited it. Dad also has osteoarthritis. I also have severe chronic sacroilitis and that's a bad one where the pain transfers up to neck. Actually my whole upper body gets sore. Ribs, chest, neck, shoulders. Struggle to lift arms.

And if that's not enough I have had severe tendinitis and bursitis in should and elbow.

I think Osteo comes with being human. But sounds like your Mum carries the genes. My shoulders give me grief, one gets better then the other takes over. But currently both are fine. Knee much better, think the Plaquenil is working well. Skin - not so much.

Its such a weird weird illness. No wonder it drove Greg House crazy. My ANA is positive

[video=youtube;bueW1i9kQao]https://www.youtube.com/watch?v=bueW1i9kQao[/video]

 

[Flying mermaid]

I get raynauds now - ghostly white fingers - when I get the least bit cold. The air cond at the office was on high this morning and sure enough for the first time in months (due to heat) my fingers are all blanched. Its a another symptom of the lupus/APS thing.

Did your Rheumatologist recommend using heat Pads? Ms FM was told it was essential to keep her core warm, to stop the finger tips eroding from Reynauds. You get stick on ones that last for 12 hours and they give a fabulous gentle heat. You can use them in shoes and gloves as well, but the ones you stick on your chest are great. I steal some of hers when I go overseas for outdoor things like going up in a balloon

 

[Pushka]

Did your Rheumatologist recommend using heat Pads? Ms FM was told it was essential to keep her core warm, to stop the finger tips eroding from Reynauds. You get stick on ones that last for 12 hours and they give a fabulous gentle heat. You can use them in shoes and gloves as well, but the ones you stick on your chest are great. I steal some of hers when I go overseas for outdoor things like going up in a balloon

No she didn't but what a great tip. This raynauds is a new thing to me so I'm just getting into it. And with the summer it wasn't an issue. But today I realised it's getting cooler.

Eroded fingers. Noice. Something else to look forward to. Rheumatologists love them though.

 

[Flying mermaid]

No she didn't but what a great tip. This raynauds is a new thing to me so I'm just getting into it. And with the summer it wasn't an issue. But today I realised it's getting cooler.

Eroded fingers. Noice. Something else to look forward to. Rheumatologists love them though.

These are the ones she recommended and they are good. You need to phone and order, as I find emails sometimes don't get answered. Junten Heat Packs - Natural Pain Relief & Warmth for up to 12 hours | Haru Hot Pads | ph 03 5024 7335

Ms FM started off with Raynauds and her GP did blood tests just in case there were any nasties and unfortunately the tests came back with RF and ANA. Good pickup by him. Raynauds (without autoimmune problems) seems quite common in Canberra.

 

[QF WP]

That empty feeling when you leave Hospital after seeing a family member being admitted (planned surgery). Time for a bit of introspection and a healthy dose of reality. Waiting for the call that they are through surgery and back in the ward, ready to accept visitors.

Having said that, my inquisitive side is looking forward to eyeballing the (gall)stone that has caused all of the problems.

 

[Pushka]

That empty feeling when you leave Hospital after seeing a family member being admitted (planned surgery). Time for a bit of introspection and a healthy dose of reality. Waiting for the call that they are through surgery and back in the ward, ready to accept visitors.

Having said that, my inquisitive side is looking forward to eyeballing the (gall)stone that has caused all of the problems.

You are seriously weird Time will fly by for them but not for you.

 

[QF WP]

Thank you Pushka, I resemble that remark . I still love you

 

[love_the_life]

These are the ones she recommended and they are good. You need to phone and order, as I find emails sometimes don't get answered. Junten Heat Packs - Natural Pain Relief & Warmth for up to 12 hours | Haru Hot Pads | ph 03 5024 7335

Ms FM started off with Raynauds and her GP did blood tests just in case there were any nasties and unfortunately the tests came back with RF and ANA. Good pickup by him. Raynauds (without autoimmune problems) seems quite common in Canberra.

If you can't get them, Dencorub do a stick on heat pad as well, available in supermarkets I think.

 

[Flying mermaid]

If you can't get them, Dencorub do a stick on heat pad as well, available in supermarkets I think.

i think the Dencorub patches are different - they are a medicated patch, whereas these ones actually generate external heat. You can't put them directly on the skin otherwise they would burn you.

 

[love_the_life]

i think the Dencorub patches are different - they are a medicated patch, whereas these ones actually generate external heat. You can't put them directly on the skin otherwise they would burn you.

Thanks for the clarification - I know that the Dencorub ones do generate heat as I used them for a sore back muscle last year but the other one is specifically a heat one. Perhaps if desperate the dencorub ones would do in a pinch.

 

[Flying mermaid]

Thanks for the clarification - I know that the decorum ones do generate heat as I used them for a sore back muscle last year but the other one is specifically a heat one. Perhaps if desperate the dencorub ones would do in a pinch.

yes definitely I think the idea of the Junten pads is rather than applying heat to a specific area, where you have a muscle ache, it creates this wonderful warmth that keeps your whole core warm. it has some sort of metal filling, that when you tear the plastic pack open and expose it to air it starts generating heat, otherwise it is inert. Certainly has worked well for me when on safaris early in the morning, or hot air balloons. Ms FM takes them on school camps

 

[suze2000]

Do they damage your clothes?

 

[JohnK]

The body is really strange.

Infection cleared up and throat and tongue now back to normal.

 

[Flying mermaid]

Do they damage your clothes?

no not at all - or set fire to them, although I was a bit worried initially . It is a gentle heat - works with layers as you put the patch between two items of clothing and it generates warmth. Probably similar to using a hot water bottle, except it is a small patch and lasts 12 hours.

 

[Hvr]

Just had some skin frozen where there was a build up of Seb K (non-medical term). It does hurt a bit and looks atrocious. Still it should be good in a few weeks.

 

[Pushka]

Just had some skin frozen where there was a build up of Seb K (non-medical term). It does hurt a bit and looks atrocious. Still it should be good in a few weeks.

No pain no gain really applies to skin stuff!

 

[rogerkambah]

After 5 months I am now on a one week (drug) holiday. And not a moment too soon either as it was all getting a bit debilitating. Even my sister had remarked that I was looking a bit frail. Weight loss is a bit of a problem, although I'm about the same weight as I was at uni 50 years ago. I was skinny then. Oncologist is suggesting a scan in 5 weeks time and then surgical removal of metastases in lungs - although I they have continued to shrink at the same rate as demonstrated in the previous scan, well I doubt a surgeon would be able to find them. Here's hoping.

 

[love_the_life]

After 5 months I am now on a one week (drug) holiday. And not a moment too soon either as it was all getting a bit debilitating. Even my sister had remarked that I was looking a bit frail. Weight loss is a bit of a problem, although I'm about the same weight as I was at uni 50 years ago. I was skinny then. Oncologist is suggesting a scan in 5 weeks time and then surgical removal of metastases in lungs - although I they have continued to shrink at the same rate as demonstrated in the previous scan, well I doubt a surgeon would be able to find them. Here's hoping.

Hope the week off medication is wonderful and you begin to feel better. Hopefully the growths in the lungs will have shrunk enough to be removed. Roll on 5 weeks! Thanks for the update - we think of you often.