Travelling with PMR

[hiandri]

Hi All,

Just thought I would give you an update on where I am at, and how I feared on my month in the USA. I started taking 15mg Pred 1 April and have gradually reduced to 13mg, which seems to be working well, only side effect a bit of nausea now and again. When first diagnosed I had a CRP of 11, which I am aware is not that high. On May 16, just before my trip my CRP was 1, and a week after returning from the USA my CRP is still 1!, my ESR 6 mm/h, but my Neutrophils were 12.32 on the high side, any comment appreciated as to why this could be.

Did tend to push the boundaries on our trip, walking probably between 10 - 14kms a day, and one day we left Fisherman's Wharf in San Fran, rode bikes to the Golden Gate Bridge, about 8kms, crossed the bridge then down to Sausalitto - looking across the harbour it seemed and felt like a really long trip, especially for a 69 year old, not to mention our 8 year old grand daughter, I might add!

Managing my Pred doses over the different time zones worked out well for me. Generally I just worked out when the 24 hours was up for my next dose, and depending on the time variation, say, added a couple of hours over the next 2 - 3 days to get it back to the time I was taking it at home. Once again, I found the alarm on my mobile saved me from missing my dose on more than one occasion- highly recommend.

Seven major cities, 8 days in NY, the Grand Canyon by helicopter, Alcatraz, NASA , I could go on - just a great trip, but no place like home, and NZ, still one of the best country's in the world, no question! Regards John

[PMRpro Ambassador]

Neutrophils tend to rise when you are on pred. And as a result, so does your total white count. Pred probably works via some sort of effect involving neutrophils.

Otherwise - excellent!!!!!

[hiandri in reply to PMRpro]

Hi PMRpro,

Thanks for the explanation, you are a fountain of knowledge and we all appreciate the efforts and contributions that you and a special handful of individuals make to this forum.

You were right, my white count WBC was also high at 13.9, do I need to be concerned about the level these two readings are at, if so, can I do anything to improve the situation?

Regards John

[PMRpro Ambassador in reply to hiandri]

No - they are fine, white cells should rise a bit in response to certain situations so it isn't a problem at that level.

Someone was waiting for surgery and the surgeon panicked because of a raised white count and wanted to cancel - I explained on the forum why the figures were raised, she told the secretary who then asked the anaesthetist (as they should have done) who said the same, op back on! I can't believe the number of doctors who have forgotten such a simple basic fact.

[hiandri in reply to PMRpro]

Thanks PMRpro, its that old 70% I mentioned in a previous post and your comment was only 70%!!! John

PS. I hope all you poms are currently watching the All Blacks play the Lions 9 all at present!

[PMRpro Ambassador in reply to hiandri]

Not available where I live... I imagine my daughter and husband are watching if they aren't working.

PS - better not say who we support in this case!

[DorsetLady PMRGCAuk volunteer]

Hi John

So pleased your vacation went well.

Don't know the answer to your query but sure others will!

Do agree with comment about NZ - it is ONE of the best!

Looking forward to seeing it again! 5 months and counting 😊

[hiandri in reply to DorsetLady]

Hi DL,

Thanks for the reply, we certainly covered a lot of territory in the 4 weeks.

If you are in Auckland at any time and would like to have a coffee and a chat, just let me know.

Regards John

[DorsetLady PMRGCAuk volunteer in reply to hiandri]

Hi John,

Not likely unfortunately. We are going to Wellington around New Year, and then to see a cousin further up country, and then on to her batch at Lake Taupo. But as SIL works on farm think time will be limited. Shame, but never mind!

[EdithWales]

That's really great John. When I was first diagnosed we were due to go to Australia and when I asked the Rheumatologist what I should do she told me to get on with my life and she would manage the disease, so I have.

Had a flare in the Maldives snorkelling with reef sharks when I was down to 3 mgms ( I now know due to this Forum it was too quick too soon) and Tiger hunting in the jungle in India was perhaps a bridge too far but I have been fine, keep it up.

For those kind friends who wished me luck for my cataract I am brilliant. As Dorset Lady said don't look at the dust and no one told me had over dyed hair and yellow teeth,perfect

recovery and having the next one done in August. Just have to keep going.

Have a good day everyone

[hiandri in reply to EdithWales]

Hi EdithWales,

Your post brought back a nightmare! My wife and I were walking with only a guide in the Tiger Reserve in Kerala, India, 3 years ago. Two kilometers into the jungle I casually asked without thinking, what kind of animals they had in the reserve. He replied, buffalo, 1000 wild elephants, which I knew could be very dangerous, and then he said 35 tigers! Silly as it sounds now, I said, do you mean just roaming around? To which he replied, yes. My immediate response was, where is your gun? To which his response was, wont need it, they sleep during the day! Do they know that I said? Feeling a lot more nervous, I decided to drill down on the facts. How big is this jungle, I asked? 900 sq miles, the answer - that's not big, 30 miles x 30 miles! How long have you been escorting people like us through this jungle on a daily basis? 11 years, the reply. The crunch question, in that time, how many times have you come across a live tiger while showing tourists the jungle? 4 times, came the reply. My brain does the rapid calculation, about once every 3 years. I'm thinking, knowing my luck, we will be number 5! Ten minutes later, and there was the horrendous sounds of branches breaking and of a large wild animal heading in our direction. The once cool guide, swung around, a priceless look of terror on his face, raising his finger for us to be absolutely silent! (which was unnecessary). I turned to my wife and said, 'this doesn't happen every day. Next minute he is on his mobile to his mates, bring the guns! He then sneaks to the brow of the track, 4 elephants including a large bull, 50m in front of us - obviously all ended well.

Thought you and others might enjoy a bit of light relief. John

[EdithWales in reply to hiandri]

You sound so like us but we were in Madhya Pradesh and actually saw the tiger and at 9.30 am so they don't sleep in the day and he was quite magnificent

I had to pull the plug on it because my face and hands swelled and my blood pressure went up alarming but it was worth it.

At 76 I have now promised I wont go anywhere where you can't drink the water. Onwards or Umlaen as we say in Wales.

[CT-5012]

Since pmr diagnosis we have had two long haul holidays Australia and the USA. I sorted my meds in the same way as above,no problems. I find my e-reader very useful when I need to rest, sometimes I sits and reads and sometimes I just sits! My husband and family now accept this but others sometimes need a little more convincing. Don't let anyone push you into doing more than you feel like doing.

Best wishes, keep smiling even if it's more of a grimace!